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Disease and user groups
  • Cancer
 
Bausewein C, Booth S, Gysels M, Kühnbach R, Haberland B, Higginson IJ. Understanding breathlessness: cross-sectional comparison of symptom burden and palliative care needs in chronic obstructive pulmonary disease and cancer. J Palliat Med 2010;13(9):1109-1118. Link
 
Braulke F, Para S, Alt-Epping B, Tewes M, Bäumer M, Haberland B, Mayer-Steinacker R, Hopprich A, de Wit M, Grabe M, Bender-Säbelkampf S, Weßling C, Aulmann C, Gerlach C, Regincos P, Fischer F, Haarmann S, Huys T, Drygas S, Rambau A, Kiani A, Schnabel A, Buhl C, Seipke S, Hiemer S, Polata S, Meßmann M, Hansmeier A, Anastasiadou L, Letsch A, Wecht D, Hellberg-Naegele M, Krug U, Wedding U, van Oorschot B. Systematic symptom screening in patients with advanced cancer treated in certified oncology centers: results of the prospective multicenter German KeSBa project. J Cancer Res Clin Oncol. 2023 May 5. doi: 10.1007/s00432-023-04818-8. Epub ahead of print. PMID: 37145199. Link
 
Buchanan D, Milroy R, Baker L, Thompson AM, Levack PA. Perceptions of anxiety in lung cancer patients and their support network. Support Care Cancer 2010;18:29–36. Link
 
Catania G, Zanini M, Signori A, Dal Molin A, Pilastri P, Bottino M, Cervetti C, Aleo G, Sasso L, Bagnasco A; INFO-QoL Collaborative Group. Providing a nurse-led complex nursing INtervention FOcused on quality of life assessment on advanced cancer patients: The INFO-QoL pilot trial. Eur J Oncol Nurs. 2021 Apr 18;52:101961. doi: 10.1016/j.ejon.2021.101961. Epub ahead of print. PMID: 33984605. Link
 
Chan HY, Chung CK, Tam SS, Chow RS. Community palliative care services on addressing physical and psychosocial needs in people with advanced illness: a prospective cohort study. BMC Palliat Care. 2021 Sep 15;20(1):143. doi: 10.1186/s12904-021-00840-0. PMID: 34525996; PMCID: PMC8442652. Link
 
Chua CK, Wu JT, Wong YY, Qu L, Tan YY, Neo PS, Pang GS. Caregiving and Its Resulting Effects-The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore. Cancers (Basel). 2016 Nov 15;8(11). pii: E105. Link
 
Corner J, Halliday D, Haviland J, Douglas HR, Bath P, Clark D, et al. Exploring nursing outcomes for patients with advanced cancer following intervention by Macmillan specialist palliative care nurses. J Adv Nurs 2003 Mar;41(6):561-74. Link
 
Davies JM, Osborne TR, Edmonds PM, Schey SA, Devereux S, Higginson IJ, Ramsenthaler C. The Myeloma Patient Outcome Scale is the first quality of life tool developed for clinical use and validated in patients with follicular lymphoma. Eur J Haematol. 2017 May;98(5):508-516. doi: 10.1111/ejh.12864. Epub 2017 Mar 9. Link
 
Edmonds P, Higginson IJ, Altmann D, Sen-Gupta G, McDonnell M. Is the presence of dyspnoea a risk factor for morbidity in cancer patients? Journal of Pain and Symptom Management 2000; 19:15-22. Link
 
Fettes L, Bone A, Etkind S, Ashford S, Higginson IJ, Maddocks M. Disability in basic activities of daily living is associated with symptom burden in older people with advanced cancer or chronic obstructive pulmonary disease: A secondary data analysis, Journal of Pain and Symptom Management (2020) Link
 
Francis H, Bates MJ, Kalilani L. A Prospective Study Assessing Tumour Response, Survival, and Palliative Care Outcomes in Patients with HIV-Related Kaposi's Sarcoma at Queen Elizabeth Central Hospital, Blantyre, Malawi. AIDS Res Treat. 2012;2012:312564. doi: 10.1155/2012/312564. Epub 2012 Mar 11. Link
 
Gomes B, Calanzani N, Koffman J, Higginson IJ. Is dying in hospital better than home in incurable cancer and what factors influence this? A population-based study. BMC Med. 2015 Oct 9;13:235. doi: 10.1186/s12916-015-0466-5. Link
 
Gonella S, Sperlinga R, Sciannameo V, Dimonte V, Campagna S (2019). Characteristics of Breakthrough Pain and Its Impact on Quality of Life in Terminally Ill Cancer Patients. Integr Cancer Ther, 18, 1534735419859095. doi:10.1177/1534735419859095 Link
 
Gutiérrez-Sánchez D, Gómez-García R, Roselló MLM, Cuesta-Vargas AI. The Quality of Dying and Death of Advanced Cancer Patients in Palliative Care and Its Association With Place of Death and Quality of Care. J Hosp Palliat Nurs. 2021 Mar 4. doi: 10.1097/NJH.0000000000000752. Epub ahead of print. PMID: 33660672 Link
 
Gysels M, Higginson IJ. Interactive technologies and videotapes for patient education in cancer care: systematic review and meta-analysis of randomised trials. Supportive Care in Cancer 2007; 15:7-20. Link
 
Gysels M, Richardson A, Higginson IJ. Does the patient-held record improve continuity and related outcomes in cancer care: a systematic review. Health Expectations 2007; 10:75-91. Link
 
Hamano J, Shinjo T, Fukumoto K, Kodama M, Kim H, Otomo S, Masumoto S, Hashimoto K, Matsuki T, Hisajima K, Miyata N, Suzuki R, Yokoya S, Miyake K, Takayanagi R, Shimizu M, Kataoka Y, Taira H, Ozone S, Takahashi H, Kizawa Y. Unresolved Palliative Care Needs of Elderly Non-Cancer Patients at Home: A Multicenter Prospective Study. J Prim Care Community Health. 2023 Jan-Dec;14:21501319231221431. doi: 10.1177/21501319231221431. PMID: 38131120; PMCID: PMC10748546. Link
 
Harding R. Monitoring patients’ status in advanced cancer. Why use a measure and how to choose one? EONS newsletter Autumn 2010:16-17. Link
 
Harding R, Higginson IJ, Donaldson N. The relationship between patient characteristics and carer psychological status in home palliative cancer care. Supportive Care in Cancer 2003;11:638-643. Link
 
Harding R, Powell RA, Namisango E, Merriman A, Gikaara N, Ali Z, Higginson IJ. Palliative care-related self-report problems among cancer patients in East Africa: a two-country study. Support Care Cancer. 2014 Dec;22(12):3185-92. doi: 10.1007/s00520-014-2301-5.Link
 
Higginson IJ, Hearn J. A multicenter evaluation of cancer pain control by palliative care teams. J Pain Symptom Manage 1997 Jul;14(1):29-35. Link
 
Higginson IJ, Gao W. Caregiver assessment of patients with advanced cancer: concordance with patients, effect of burden and positivity. Health Qual Life Outcomes 2008;6:42. Link
 
Horton R. Differences in assessment of symptoms and quality of life between patients with advanced cancer and their specialist palliative care nurses in a home care setting. Palliat Med 2002 Nov;16(6):488-94. Link
 
Tetsuya Ito, Emi Tomizawa, Yuki Yano, Dai Akiyama, Haruko Konishi, Kiyozumi Takei, Masahiro Ikeda, Naoko Takahashi, Fumio Shaku. Transitional Changes of Anxiety, Pain and Other Symptoms in Cancer Patients Admitted to a Palliative Care Unit, Evaluated Using the Support Team Assessment Schedule - Japanese Version. Am J Hosp Palliat Care. 2024 May 15:10499091241254522. doi: 10.1177/10499091241254522. Online ahead of print. Link
 
Justo Roll I, Simms V, Harding R. Multidimensional problems among advanced cancer patients in Cuba: awareness of diagnosis is associated with better patient status. J Pain Symptom Manage 2009 Mar;37(3):325-30. Link
 
Lerzynski GA, Allen A, Murray SA. An assessment of the ability of the Palliative Care Outcome Scale (POS) in different forms of care to measure palliative care outcomes in different settings. The use of a palliative care outcome measure in cancer patients attending St Columba's day hospice, Edinburgh, and in patients with lung cancer or heart failure in primary care. Z Palliativmedizin 2004;5(19):19-27. Link
 
Malik FA, Gysels M, Higginson IJ. Living with breathlessness: a survey of caregivers of breathless patients with lung cancer or heart failure. Palliat Med. 2013 Jul;27(7):647-56. doi: 10.1177/0269216313488812. Epub 2013 May 23. Link
 
Monnery D, Benson S, Griffiths A, Cadwallader C, Hampton-Matthews J, Coackley A, Cooper M, Watson A. Multi-professional-delivered enhanced supportive care improves quality of life for patients with incurable cancer. Int J Palliat Nurs. 2018 Oct 2;24(10):510-514. doi: 10.12968/ijpn.2018.24.10.510. Link
 
Mori M, Kawaguchi T, Imai K, Yokomichi N, Yamaguchi T, Suzuki K, Matsunuma R, Watanabe H, Maeda I, Matsumoto Y, Matsuda Y, Morita T; EASED Investigators. Visualizing how to use parenteral opioids for terminal cancer dyspnea: A pilot, multicenter, prospective, observational study. J Pain Symptom Manage. 2021 May 13:S0885-3924(21)00327-4. doi: 10.1016/j.jpainsymman.2021.05.001. Epub ahead of print. PMID: 33992759. Link
 
Mori M, Yamaguchi T, Suzuki K, Matsuda Y, Matsunuma R, Watanabe H, Ikari T, Matsumoto Y, Imai K, Yokomichi N, Miwa S, Yamauchi T, Okamoto S, Inoue S, Inoue A, Hui D, Morita T, Satomi E; Japanese Dyspnea Relief Investigators. Do types of opioids matter for terminal cancer dyspnea? A preliminary multicenter cohort study. J Pain Symptom Manage. 2023 Apr 18:S0885-3924(23)00461-X. doi: 10.1016/j.jpainsymman.2023.04.009. Epub ahead of print. PMID: 37080479. Link
 
Morita T, Takigawa C, Onishi H, Tajima T, Tani K, Matsubara T, et al. Opioid rotation from morphine to fentanyl in delirious cancer patients: an open-label trial. J Pain Symptom Manage 2005 Jul;30(1):96-103. Link
 
Osborne TR, Ramsenthaler C, Schey SA, Siegert RJ, Edmonds PM, Higginson IJ. Improving the assessment of quality of life in the clinical care of myeloma patients: the development and validation of the Myeloma Patient Outcome Scale (MyPOS). BMC Cancer. 2015 Apr 14;15:280. Link
 
Osborne TR, Ramsenthaler C, Siegert RJ, Edmonds PM, Schey SA, Higginson IJ. What issues matter most to people with multiple myeloma and how well are we measuring them? A systematic review of quality of life tools. Eur J Haematol 2012; 89(6):437-57. Link
 
Osborne TR, Ramsenthaler C, Siegert R, Edmonds P, Schey S,Higginson IJ. Health related quality of life instruments for use in people with multiple myeloma: a systematic literature review. Haematologica 2011; 96(s2):366.
 
Palat G, Stenlander C, Jacob J, Sinha S, Rapelli V, Wiebe T, Brun E, Segerlantz M. Specialized Palliative Care and the Quality of Life for Hospitalized Cancer Patients at a Low-Resource Hospital in India. Indian J Palliat Care. 2018 Jul-Sep;24(3):289-299. doi: 10.4103/IJPC.IJPC_95_18. Link
 
Pelayo-Alvarez M, Perez-Hoyos S, Agra-Varela Y. Clinical effectiveness of online training in palliative care of primary care physicians. J Palliat Med. 2013 Oct;16(10):1188-96. doi: 10.1089/jpm.2013.0005. Epub 2013 Aug 29. Link
 
Ramsenthaler C, Gao W, Siegert RJ, Edmonds PM, Schey SA, Higginson IJ (2019). Symptoms and anxiety predict declining health-related quality of life in multiple myeloma: A prospective, multi-centre longitudinal study. Palliat Med, 33(5), 541-551. doi:10.1177/0269216319833588 Link
 
Ramsenthaler C, Gao W, Siegert RJ, Schey SA, Edmonds PM, Higginson IJ. Longitudinal validity and reliability of the Myeloma Patient Outcome Scale (MyPOS) was established using traditional, generalizability and Rasch psychometric methods. Qual Life Res. 2017 Jul 27. doi: 10.1007/s11136-017-1660-z. [Epub ahead of print] Link
 
Ramsenthaler C, Osborne TR, Gao W, Siegert RJ, Edmonds PM, Schey SA, Higginson IJ. The impact of disease-related symptoms and palliative care concerns on health-related quality of life in multiple myeloma: a multi-centre study. BMC Cancer 2016;16:427. Link
 
Ratzel E, Pretzell IM, Kindler T, Weber M, Gerlach C. Patient Reported Outcome Measurement (PROM) under real-life conditions of non-curable cancer outpatients with the Integrated Palliative Outcome Scale (IPOS) and NCCN-Distress Thermometer - A mixed methods study. PEC Innov. 2024 Feb 12;4:100264. doi: 10.1016/j.pecinn.2024.100264. PMID: 38404931; PMCID: PMC10883829. Link
 
Roch C, Heckel M, van Oorschot B, Alt-Epping B, Tewes M. Screening for Palliative Care Needs: Pilot Data From German Comprehensive Cancer Centers. JCO Oncol Pract. 2021 Feb 11:OP2000698. doi: 10.1200/OP.20.00698. Epub ahead of print. PMID: 33571007 Link
 
Roll IJ, Simms V, Harding R. Multidimensional Problems Among Advanced Cancer Patients in Cuba: Awareness of Diagnosis Is Associated with Better Patient Status. Journal of Pain & Symptom Management 2009, 37(3):325-330. Link
 
Schuler T, King C, Matsveru T, Back M, Clark K, Chin D, Lilian R, Gallego B, Coiera E, Currow DC. Wearable-Triggered Ecological Momentary Assessments Are Feasible in People With Advanced Cancer and Their Family Caregivers: Feasibility Study from an Outpatient Palliative Care Clinic at a Cancer Center. J Palliat Med. 2023 May 3. doi: 10.1089/jpm.2022.0535. Epub ahead of print. PMID: 37134212. Link
 
Sherry KL, McAuley G. Symptom prevalence and the use of systematic symptom assessment. Palliat Med. 2004 Jan;18(1):75-6. Link
 
Solar S, Wieditz J, Lordick F, Mehnert-Theuerkauf A, Oechsle K, van Oorschot B, Thomas M, Asendorf T, Nauck F, Alt-Epping B. Screening versus multidimensional assessment of symptoms and psychosocial distress in cancer patients from the time of incurability. Front Oncol. 2023 Jan 26;13:1002499. doi: 10.3389/fonc.2023.1002499. PMID: 36776341; PMCID: PMC9908949. Link
 
Steinmann D, Schafer C, van OB, Wypior HJ, Bruns F, Bolling T, et al. Effects of radiotherapy for brain metastases on quality of life (QoL). Prospective pilot study of the DEGRO QoL working party. Strahlenther Onkol 2009 Mar;185(3):190-7. Link
 
Stromgren AS, Groenvold M, Pedersen L, Olsen AK, Sjogren P. Symptomatology of cancer patients in palliative care: content validation of self-assessment questionnaires against medical records. Eur J Cancer 2002 Apr;38(6):788-94. Link
 
Subhradev S, Biji M S, Santam C, Sindhu N R, Satheesan B. Pairwise Comparison in Repeated Scores-Application in Palliative Cancer Patients. Journal of Data Science 2015, 795-806. Link
 
Taniguchi Y, Matsuda Y, Mori M, Ito M, Ikari T, Tokoro A, Aiki S, Hoshino S, Kiuchi D, Suzuki K, Igarashi Y, Odagiri T, Oya K, Kubo E, Yamaguchi T. Effectiveness and safety of opioids for dyspnea in patients with lung cancer: secondary analysis of multicenter prospective observational study. Transl Lung Cancer Res. 2022 Dec;11(12):2395-2402. doi: 10.21037/tlcr-22-512. PMID: 36636410; PMCID: PMC9830271. Link
 
Traldi Macedo L, Gomes Bastos Fernandes L, Palmeira HM, Souza Tanios B, Gaspar KC, Lima CSP. Assessment of symptom intensity and psychological well-being of patients with advanced cancer undergoing palliative care in a Brazilian public hospital: A cross-sectional study. Palliat Support Care. 2022 Aug 3:1-7. doi: 10.1017/S1478951522000967. Online ahead of print. PMID: 35920303. Link
 
Wei G, Higginson IJ. Agreement between terminal cancer patients and their caregivers reported palliative outcomes: the role of caregiving burden. 5th Research Forum of the EAPC. Palliative Medicine 2008;22:401.
 
Yamaguchi T, Matsunuma R, Matsuda Y, Tasaki J, Ikari T, Miwa S, Aiki S, Takagi Y, Kiuchi D, Suzuki K, Oyamada S, Ariyoshi K, Kihara K, Mori M. Systemic opioids for dyspnea in cancer patients: A real-world observational study. J Pain Symptom Manage. 2023 Jan 11:S0885-3924(23)00004-0. doi: 10.1016/j.jpainsymman.2022.12.146. Epub ahead of print. PMID: 36641006. Link
 
Yang GM, Lee Y, Ke Y, Neo PSH, Cheung YB. Feasibility of Weekly Integrated Palliative Care Outcome Scale (IPOS) Within a Stepped Care Model. J Pain Symptom Manage. 2024 Jun 13:S0885-3924(24)00810-8. doi: 10.1016/j.jpainsymman.2024.06.004. Epub ahead of print. PMID: 38878909. Link
 
  • Chronic obstructive pulmonary disease (COPD)
 
Bausewein C, Booth S, Gysels M, Kühnbach R, Haberland B, Higginson IJ. Understanding breathlessness: cross-sectional comparison of symptom burden and palliative care needs in chronic obstructive pulmonary disease and cancer. J Palliat Med 2010;13(9):1109-1118. Link
 
Bausewein C, Booth S, Higginson IJ. Measurement of dyspnoea in the clinical rather than the research setting. Current Opinion in Supportive and Palliative Care 2008; 2:95-99. Link
 
Fei F, Siegert RJ, Zhang X, Gao W, Koffman J. Symptom clusters, associated factors and health-related quality of life in patients with chronic obstructive pulmonary disease: A structural equation modelling analysis. J Clin Nurs. 2022 Jan 30. doi: 10.1111/jocn.16234. Epub ahead of print. PMID: 35098602. Link
 
Higginson IJ, Bausewein C, Reilly CC, Gao W, Gysels M, Dzingina M, et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. The Lancet Respiratory Medicine 2014. Link
 
Siouta N, Heylen A, Aertgeerts B, Clement P, Van Cleemput J, Janssens W, Menten J. (2019). Early integrated palliative care in chronic heart failure and chronic obstructive pulmonary disease: protocol of a feasibility before-after intervention study. Pilot Feasibility Stud, 5, 31. doi:10.1186/s40814-019-0420-y. eCollection 2019. Link
 
  • Dementia
 
Brandt HE, Deliens L, van der Steen JT, Ooms ME, Ribbe MW, van der Wal G. The last days of life of nursing home patients with and without dementia assessed with the palliative care outcome scale. Palliat Med 2005 Jun;19(4):334-42. Link
 
Davies N, Sampson EL, Aworinde J, Gillam J, Kenten C, Moore K, Phillips B, Harvey C, Anderson J, Ward J, Evans CJ, Ellis-Smith C; EMBED-Care Team. Co-Designing a Palliative Dementia Care Framework to Support Holistic Assessment and Decision Making: The EMBED-Care Framework. Health Expect. 2024 Oct;27(5):e70011. doi: 10.1111/hex.70011. PMID: 39215967; PMCID: PMC11365481. Link
 
Ellis-Smith C, Evans CJ, Bone AE, Henson LA, Dzingina M, Kane PM, Higginson IJ, Daveson BA, on behalf of BuildCARE. Measures to assess commonly experienced symptoms for people with dementia in long-term care settings: a systematic review. BMC Medicine 2016 Feb 26;14(1):38. doi: 10.1186/s12916-016-0582-x. Link
 
Ellis-Smith C, Evans CJ, Murtagh FE, Henson LA, Firth AM, Higginson IJ, Daveson BA. Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia. Palliat Med. 2017 Jul;31(7):651-660. doi: 10.1177/0269216316675096. Epub 2016 Oct 25. Link
 
Ellis-Smith C, Higginson IJ, Daveson BA, Henson LA, Evans CJ; BuildCARE. How can a measure improve assessment and management of symptoms and concerns for people with dementia in care homes? A mixed-methods feasibility and process evaluation of IPOS-Dem. PLoS One. 2018 Jul 11;13(7):e0200240. doi: 10.1371/journal.pone.0200240. eCollection 2018. Link
 
Hermans K, Cohen J, Spruytte N, Van Audenhove C, Declercq A. Palliative care needs and symptoms of nursing home residents with and without dementia: A cross-sectional study. Geriatr Gerontol Int. 2016 Sep 16. doi: 10.1111/ggi.12903. [Epub ahead of print] Link
 
Kinley J, Ellis-Smith C, Hurt M, McIvor K, Evans CJ (2019). A collaborative approach in dementia care to improve clinical effectiveness and priorities for research through audit. 25, 588-595. Link
 
Puente-Fernández D, Campos-Calderón CP, -Burgos AAE, Hueso-Montoro C, Roldán-López CB, Montoya-Juárez R. Palliative Care Symptoms, Outcomes, and Interventions for Chronic Advanced Patients in Spanish Nursing Homes with and without Dementia. Int J Environ Res Public Health. 2020;17(5):1465. Published 2020 Feb 25. Link
 
Spichiger F, Keller Senn A, Volken T, Larkin P, Koppitz A. Integrated Palliative Outcome Scale for People with Dementia: easy language adaption and translation. J Patient Rep Outcomes. 2022 Feb 15;6(1):14. doi: 10.1186/s41687-022-00420-7. PMID: 35169943. Link
 
  • Healthcare professionals (HCP)
 
Antunes B, Ferreira PL, Harding R, Higginson IJ. Development of a Clinical Aid for Routine Assessment of Symptoms and Multidimensional Outcomes in Palliative Care: Development of the POS/POS-S Score Card. EAPC Scientific Congress, Lisbon, Portugal. European Journal of Palliative Care 2011; P555.
 
Corner J, Halliday D, Haviland J, Douglas HR, Bath P, Clark D, et al. Exploring nursing outcomes for patients with advanced cancer following intervention by Macmillan specialist palliative care nurses. J Adv Nurs 2003 Mar;41(6):561-74. Link
 
Hall S, Kolliakou A, Petkova H, Froggatt K, Higginson IJ. Interventions for improving palliative care for older people living in nursing care homes. Cochrane Database Syst Rev 2011; (3): CD007132. Link
 
Higginson IJ. Can Professionals Improve Their Assessments? Editorial. Journal of Pain and Symptom Management 1998; 15:149-150.
 
Horton R. Differences in assessment of symptoms and quality of life between patients with advanced cancer and their specialist palliative care nurses in a home care setting. Palliat Med 2002 Nov;16(6):488-94. Link
 
Hughes R, Aspinal F, Addington-Hall J, Chidgey J, Drescher U, Dunckley M, et al. Professionals' views and experiences of using outcome measures in palliative care. Int J Palliat Nurs 2003 Jun;9(6):234-8. Link
 
Slater A, Freeman E. Is the Palliative Care Outcome Scale useful to staff in a day hospice unit? Int J Palliat Nurs 2005 Jul;11(7):346-54. Link
 
  • Heart failure
 
DeGroot L, Pavlovic N, Perrin N, Gilotra NA, Dy SM, Davidson PM, Szanton SL, Saylor MA. Palliative Care Needs of Physically Frail Community-Dwelling Older Adults with Heart Failure. J Pain Symptom Manage. 2023 Jan 31:S0885-3924(23)00042-8. doi: 10.1016/j.jpainsymman.2023.01.016. Epub ahead of print. PMID: 36736499. Link
 
Kane PM, Daveson BA, Ryan K, Ellis-Smith CI, Mahon NG, McAdam B, McQuilllan R, Tracey C, Howley C, O'Gara G, Raleigh C, Higginson IJ, Koffman J, Murtagh FEM; BuildCARE. Feasibility and acceptability of a patient-reported outcome intervention in chronic heart failure. BMJ Support Palliat Care. 2017 Sep 1. pii: bmjspcare-2017-001355. doi: 10.1136/bmjspcare-2017-001355. [Epub ahead of print] Link
 
Kane PM, Ellis-Smith CI, Daveson BA, Ryan K, Mahon NG, McAdam B, McQuillan R, Tracey C, Howley C, O'Gara G, Raleigh C, Higginson IJ, Murtagh FE, Koffman J; BuildCARE. Understanding how a palliative-specific patient-reported outcome intervention works to facilitate patient-centred care in advanced heart failure: A qualitative study. Palliat Med. 2018 Jan;32(1):143-155. doi: 10.1177/0269216317738161. Epub 2017 Nov 20. Link
 
Malik FA, Gysels M, Higginson IJ. Living with breathlessness: a survey of caregivers of breathless patients with lung cancer or heart failure. Palliat Med. 2013 Jul;27(7):647-56. doi: 10.1177/0269216313488812. Epub 2013 May 23. Link
 
Oriani A, Guo P, Gadoud A, Dunleavy L, Kane P, Murtagh FEM (2019). What are the main symptoms and concerns reported by patients with advanced chronic heart failure?-a secondary analysis of the Palliative care Outcome Scale (POS) and Integrated Palliative care Outcome Scale (IPOS). Ann Palliat Med, doi:10.21037/apm.2019.08.10. Link
 
Roch C, Palzer J, Zetzl T, Störk S, Frantz S, van Oorschot B (2020). Utility of the integrated palliative care outcome scale (IPOS): a cross-sectional study in hospitalised patients with heart failure. European Journal of Cardiovascular Nursing. Link
 
Walsh M, Bowen E, Vaughan C, Kiely F. Heart failure symptom burden in outpatient cardiology: observational cohort study. BMJ Support Palliat Care. 2023 Apr 19:spcare-2023-004167. doi: 10.1136/spcare-2023-004167. Epub ahead of print. PMID: 37076262. Link
 
  • HIV/AIDS
 
Francis H, Bates MJ, Kalilani L. A Prospective Study Assessing Tumour Response, Survival, and Palliative Care Outcomes in Patients with HIV-Related Kaposi's Sarcoma at Queen Elizabeth Central Hospital, Blantyre, Malawi. AIDS Res Treat. 2012;2012:312564. doi: 10.1155/2012/312564. Epub 2012 Mar 11. Link
 
Grill KB, Wang J, Cheng YI, Lyon ME. The Role of Religiousness and Spirituality in Health-related Quality of Life of Persons Living with HIV: A Latent Class Analysis. Psycholog Relig Spiritual. 2020 Nov;12(4):494-504. doi: 10.1037/rel0000301. Epub 2020 Jan 30. PMID: 33777311; PMCID: PMC7992907. Link
 
Harding R, Selman L, Agupio G, Dinat N, Downing J, Gao W, Gwyther L, Mashao T, Mmoledi K, Moll A, Mpanga Sebuyira L, Ikin B, Higginson I. Intensity and correlates of multidimensional problems in HIV patients receiving integrated palliative care in sub-Saharan Africa. BMJ Sexually Transmitted Infections. 2012. 88(8):607-11. Link
 
Harding R, Simms V, Alexander C, Collins K, Combo E, Memiah P, Patrick G, Sigalla G, Loy G. Can palliative care integrated within HIV outpatient settings improve pain and symptom control in a low-income country? A prospective, longitudinal, controlled intervention evaluation. AIDS Care. 2013;25(7):795-804. doi: 10.1080/09540121.2012.736608. Epub 2012 Oct 31. Link
 
Harding R, Simms V, Penfold S, Downing J, Namisango E, Powell RA, Mwangi-Powell F, Moreland S, Gikaara N, Atieno M, Higginson IJ. Quality of life and wellbeing among HIV outpatients in East Africa: a multicentre observational study. BMC Infect Dis 2014; 14(1): 613. Link
 
Karus D, Raveis VH, Marconi K, Hanna B, Selwyn P, Alexander C, Perrone M, Higginson IJ. Service needs of patients with advanced HIV disease: a comparison of client and staff reports at three palliative care projects. AIDS Patient Care and STDs. 2004; 18:145-158. Link
 
Krug R, Karus D, Selwyn PA, Raveis VH. Late-stage HIV/AIDS patients' and their familial caregivers' agreement on the palliative care outcome scale. J Pain Symptom Manage 2010 Jan;39(1):23-32. Link 
 
Lowther K, Selman L, Simms V, Gikaara N ,Ahmed A , Ali Z, Kariuki H, Sherr L, Higginson, IJ, Harding R. Nurse-led palliative care for HIV-positive patients taking antiretroviral therapy in Kenya: a randomised controlled trial. The Lancet HIV 2015. doi:10.1016/S2352-3018(15)00111-3. Link
 
Pappas G, Wolf RC, Morineau G, Harding R. Validity of measures of pain and symptoms in HIV/AIDS infected households in resources poor settings: results from the Dominican Republic and Cambodia. BMC Palliat Care 2006;5:3. Link 
 
Simms V, Gikaara N, Munene G, Atieno M, Kataike J, Nsubuga C, Banga G, Namisango E, Penfold S, Fayers P, Powell RA, Higginson IJ, Harding R. Multidimensional patient-reported problems within two weeks of HIV diagnosis in East Africa: a multicentre observational study. PLoS One. 2013;8(2):e57203. doi: 10.1371/journal.pone.0057203. Epub 2013 Feb 19. Link
 
  • Informal carers
 
Dawber R, Armour K, Ferry P, Mukherjee B, Carter C, and Meystre C. Comparison of informal caregiver and named nurse assessment of symptoms in elderly patients dying in hospital using the palliative outcome scale. BMJ Support Palliat Care. 2016 Jan 12. pii: bmjspcare-2015-000850. doi: 10.1136/bmjspcare-2015-000850. [Epub ahead of print] Link
 
Giordanoa A, Ciminob V, Campanellac A, Moroned G, Fuscod, Farinottia M et al. Low quality of life and psychological wellbeing contrast with moderate perceived burden in carers of people with severe multiple sclerosis. Journal of the Neurological Sciences, Vol.366, 15 July 2016, Pages 139–145. Link
 
Gomes B, McCrone P, Hall S, Riley J, Koffman J, Higginson IJ. Cognitive interviewing of bereaved relatives to improve the measurement of health outcomes and care utilisation at the end of life in a mortality followback survey. Support Care Cancer. 2013 Oct;21(10):2835-44. doi: 10.1007/s00520-013-1848-x. Epub 2013 Jun 8. Link
 
Harding R, Higginson IJ, Donaldson N. The relationship between patient characteristics and carer psychological status in home palliative cancer care. Supp Care Cancer 2003;11:638-643. Link 
 
Heckel M, Bussmann S, Stiel S, Weber M, Ostgathe C. Validation of the German Version of the Quality of Dying and Death Questionnaire for Informal Caregivers (QoDD-D-ANg). J Pain Symptom Manage. 2015 Jun 12. pii: S0885-3924(15)00253-5. doi: 10.1016/j.jpainsymman.2015.03.020. Link
 
Higginson IJ, Gao W. Caregiver assessment of patients with advanced cancer: concordance with patients, effect of burden and positivity. Health Qual Life Outcomes 2008;6:42. Link 
 
Krug R, Karus D, Selwyn PA, Raveis VH. Late-stage HIV/AIDS patients' and their familial caregivers' agreement on the palliative care outcome scale. J Pain Symptom Manage 2010 Jan;39(1):23-32.Link
 
Malik FA, Gysels M, Higginson IJ. Living with breathlessness: a survey of caregivers of breathless patients with lung cancer or heart failure. Palliat Med. 2013 Jul;27(7):647-56. doi: 10.1177/0269216313488812. Epub 2013 May 23. Link
 
Ullrich A, Goldbach S, Hollburg W, Wagener B, Rommel A, Müller M, Kirsch D, Kopplin-Foertsch K, Schulz H, Bokemeyer C, Oechsle K. Specialist palliative care until the very end of life - reports of family caregivers and the multiprofessional team. BMC Palliat Care. 2023 Oct 10;22(1):153. doi: 10.1186/s12904-023-01266-6. PMID: 37814271; PMCID: PMC10563273. Link
 
  • Multiple Sclerosis (MS)
 
Burman R, Vivat B, Edmonds P, Silber E, Higginson IJ. Palliative care needs of people severely affected by multiple sclerosis (MS): views of healthcare professionals. Palliative Medicine 2004; 18:163.
 
Edmonds P, Burman R, Silber E, Hart S, Higginson IJ. Are there differences between those patients severely affected by multiple sclerosis included in and excluded from a randomised controlled trial of a new palliative care service? Palliative Medicine 2006; 20:354.
 
Edmonds P, Burman R, Silber E, Hart S, Higginson I. Evaluation of a novel palliative care service for patients severely affected by multiple sclerosis. Palliative Medicine 2006; 20:245.
 
Edmonds P, Hart S, GAO W, Vivat B, Burman R, Silber E, et al. Palliative care for people severely affected by multiple sclerosis: evaluation of a novel palliative care service. Mult Scler 2010 May;16(5):627-36. Link
 
Giovannetti AM, Pietrolongo E, Giordano A, Cimino V, Campanella A, Morone G, et al. Individualized quality of life of severely affected multiple sclerosis patients: practicability and value in comparison with standard inventories. Qual Life Res. 2016 Nov;25(11):2755-2763. Epub 2016 Apr 28. Link
 
Giordanoa A, Ciminob V, Campanellac A, Moroned G, Fuscod, Farinottia M et al. Low quality of life and psychological wellbeing contrast with moderate perceived burden in carers of people with severe multiple sclerosis. Journal of the Neurological Sciences, Vol.366, 15 July 2016, Pages 139–145. Link
 
Higginson IJ, Edmonds P, Vivat B, Burman R, Silber E. Do people with MS have palliative care needs? European Journal of Palliative Care 2005: EAPC.
 
Higginson IJ, Hart S, Silber E, Burman R, Edmonds P. Symptom prevalence and severity in people severely affected by Multiple Sclerosis. J Pall Care 2006;22:158-165. Link
 
Higginson IJ, McCrone P, Hart SR, Burman R, Silber E, Edmonds PM. Is short-term palliative care cost-effective in multiple sclerosis? A randomized phase II trial. J Pain Symptom Manage. 2009 Dec;38(6):816-26. Link
 
Higginson IJ, Vivat B, Silber E, Saleem T, Burman R, Hart S, Edmonds P. Study protocol: delayed intervention randomised controlled trial within the Medical Research Council (MRC) Framework to assess the effectiveness of a new palliative care service. BMC Palliative Care 2006; 5:7. Link
 
Saleem T, Leigh N, Higginson IJ. Symptom prevalence amongst people affected by advanced and progressive neurological conditions – a systematic review. European Journal of Palliative Care 2007: EAPC. Link
 
Sleeman KE, Higginson IJ. A psychometric validation of two brief measures to assess palliative need in patients severely affected by multiple sclerosis. J Pain Symptom Manage. 2013 Sep;46(3):406-12. doi: 10.1016/j.jpainsymman.2012.08.007. Epub 2012 Nov 27. Link
 
Solari A, Giordano A, Grasso MG, Confalonieri P, Patti F, Lugaresi A, Palmisano L, Amadeo R, Martino G, Ponzio M, Casale G, Borreani C, Causarano R, Veronese S, Zaratin P, Battaglia MA; PeNSAMI project. Home-based palliative approach for people with severe multiple sclerosis and their carers: study protocol for a randomized controlled trial. Trials. 2015 Apr 23;16(1):184 Link
 
Solari A, Giordano A, Patti F, Grasso MG, Confalonieri P, Palmisano L, Ponzio M, Borreani C, Rosato R, Veronese S, Zaratin P, Battaglia MA; PeNSAMI Project. Randomized controlled trial of a home-based palliative approach for people with severe multiple sclerosis. Mult Scler. 2017 Apr 1:1352458517704078. doi:10.1177/1352458517704078. [Epub ahead of print] Link
 
Strupp J, Voltz R, and Golla H. Opening locked doors: Integrating a palliative care approach into the management of patients with severe multiple sclerosis. Multiple Sclerosis Journal 2016, Vol. 22(1) 13 –18 DOI: 10.1177/ 1352458515608262. Link
 
Vivat B, Edmonds P, Burman R, Silber E, Higginson IJ. Developing a palliative care and neurological service for people severely affected by multiple sclerosis (MS) in southeast London. Palliative Medicine 2004; 18:337.
 
  • Parkinson's Plus syndromes and Parkinson's Disease
 
Doherty M, Chukwusa E, McQuillan R, Cranfield F, Gao W. The Palliative Care Needs of Patients with Multiple Sclerosis, Parkinson's Related Diseases, and Motor Neurone Disease: A Secondary Analysis of the OPTCARE Neuro Trial Data. J Palliat Med. 2024 Apr 9. doi: 10.1089/jpm.2023.0437. Epub ahead of print. PMID: 38597932. Link
 
Higginson IJ, Gao W, Saleem TZ, Chaudhuri KR, Burman R, McCrone P, Leigh PN. Symptoms and quality of life in late stage Parkinson syndromes: a longitudinal community study of predictive factors. PLoS One. 2012;7(11):e46327. doi: 10.1371/journal.pone.0046327. Epub 2012 Nov 7. Link
 
Saleem TZ, Higginson IJ, Chaudhuri KR, Martin A, Burman R, Leigh PN. Symptom prevalence, severity and palliative care needs assessment using the Palliative Outcome Scale: a cross-sectional study of patients with Parkinson's disease and related neurological conditions. Palliat Med. 2013 Sep;27(8):722-31. doi: 10.1177/0269216312465783. Epub 2012 Dec 3. Link
 
  • Patients (service users)
 
Higginson IJ, Gao W. Caregiver assessment of patients with advanced cancer: concordance with patients, effect of burden and positivity. Health Qual Life Outcomes 2008;6:42. Link
 
Horton R. Differences in assessment of symptoms and quality of life between patients with advanced cancer and their specialist palliative care nurses in a home care setting. Palliat Med 2002 Nov;16(6):488-94. Link
 
Pidgeon T, Johnson CE, Currow D, Yates P, Banfield M, Lester L, Allingham SF, Bird S, Eagar K. A survey of patients' experience of pain and other symptoms while receiving care from palliative care services. BMJ Support Palliat Care. 2015 Mar 5. doi: 10.1136/bmjspcare-2014-000748. Link
 
Slater A, Freeman E. Patients' views of using an outcome measure in palliative day care: a focus group study. Int J Palliat Nurs 2004 Jul;10(7):343-51. Link
 
Stromgren AS, Groenvold M, Pedersen L, Olsen AK, Sjogren P. Symptomatology of cancer patients in palliative care: content validation of self-assessment questionnaires against medical records. Eur J Cancer 2002 Apr;38(6):788-94. Link
 
  • Renal
 
Berenguer-Martínez JM, Bernal-Celestino RJ, León-Martín AA, González-Moro MTR, Fernández-Calvo N, Arias-Del-Campo L, Civera-Miguel M. Quality of Life and Related Factors in Patients Undergoing Renal Replacement Therapy at the Hospital General Universitario de Ciudad Real: Cross Sectional Descriptive Observational Study. J Clin Med. 2023 Mar 14;12(6):2250. doi: 10.3390/jcm12062250. PMID: 36983250. Link
 
Brennan F, Collett G, Josland EA, Brown MA. The symptoms of patients with CKD stage 5 managed without dialysis. Progress in Palliative Care 2014. Link
 
Brennan F, Siva B, Crail S. Appropriate Assessment of Symptom Burden and Provision of Patient Information. Nephrology (Carlton). 2013 Apr 16. doi: 10.1111/nep.12075. [Epub ahead of print] Link
 
Bristowe K, Horsley HL, Shepherd K, Brown H, Carey I, Matthews B, O'Donoghue D, Vinen K, Murtagh FE. Thinking ahead--the need for early Advance Care Planning for people on haemodialysis: A qualitative interview study. Palliat Med. 2015 May;29(5):443-50. Link
 
Brown MA, Collett GK, Josland EA, Foote C, Li Q, Brennan FP. CKD in Elderly Patients Managed without Dialysis: Survival, Symptoms, and Quality of Life. Clin J Am Soc Nephrol. 2015 Feb 6;10(2):260-8. doi: 10.2215/CJN.03330414. Link
 
Cheikh Hassan HI, Brennan F, Collett G, Josland EA, Brown MA. Efficacy and safety of gabapentin for uremic pruritus and restless legs syndrome in conservatively managed patients with chronic kidney disease. J Pain Symptom Manage. 2015 Apr;49(4):782-9. doi: 10.1016/j.jpainsymman.2014.08.010. Link
 
Douglas C, Murtagh FEM, Chambers EJ, Howse M, Ellershaw J. Symptom management for the adult patient dying with advanced chronic kidney disease: A review of the literature and development of evidence-based guidelines by a United Kingdom Expert Consensus Group. Palliat Med 2009, 23:103-110. Link
 
Gutiérrez Sánchez D, Leiva-Santos JP, Cuesta-Vargas AI. Symptom Burden Clustering in Chronic Kidney Disease Stage 5. Clin Nurs Res. 2017 Nov 1:1054773817740671. doi: 10.1177/1054773817740671. [Epub ahead of print] Link
 
Isautier J, Webster AC, Lambert K, Shepherd HL, McCaffery K, Sud K, Kim J, Liu N, De La Mata N, Raihana S, Kelly PJ, Muscat DM; SUCCESS Study Group. Evaluation of the SUCCESS Health Literacy App for Australian Adults With Chronic Kidney Disease: Protocol for a Pragmatic Randomized Controlled Trial. JMIR Res Protoc. 2022 Aug 31;11(8):e39909. doi: 10.2196/39909. PMID: 36044265.Link
 
Lowney AC, Myles HT, Bristowe K, Lowney EL, Shepherd K, Murphy M, O'Brien T, Casserly L, McQuillan R, Plant WD, Conlon PJ, Vinen C, Eustace JA, Murtagh FEM. Understanding What Influences the Health-Related Quality of Life of Hemodialysis Patients: A Collaborative Study in England and Ireland. J Pain Symptom Manage 2015 Dec;50(6):778-85. doi: 10.1016/j.jpainsymman.2015.07.010. Epub 2015 Aug 20. Link
 
Liu J, Purtell L, Bonner A. Kidney supportive care for working age adults with chronic kidney disease: A profile of characteristics and symptom burden. Nephron. 2023 Jul 10. doi: 10.1159/000531872. Online ahead of print. PMID: 37429259 Link
 
Moskovitch JT, Mount PF, Davies MRP. (2019). Changes in Symptom Burden in Dialysis Patients Assessed Using a Symptom-Reporting Questionnaire in Clinic. J Palliat Care, 825859719827315. doi:10.1177/0825859719827315. [Epub ahead of print] Link
 
Murphy E, Murtagh FEM, Carey I, Sheerin NS. Understanding symptoms in patients with advanced chronic kidney disease managed without dialysis: use of a short patient-completed assessment tool. Nephron Clinical Practice 2009;111:c74-c80. Link
 
Murtagh FEM. Improving care at the end of life for renal patients (Editorial). Journal of Renal Nursing 2009; 1(3):109.
 
Nixon AC, Bampouras TM, Gooch HJ, et al. The EX-FRAIL CKD trial: a study protocol for a pilot randomised controlled trial of a home-based EXercise programme for pre-frail and FRAIL, older adults with Chronic Kidney Disease. BMJ Open. 2020;10(6):e035344. Published 2020 Jun 22. Link
 
Purtell L, Sowa PM, Berquier I, Scuderi C, Douglas C, Taylor B, Kramer K, Hoy W, Healy H, Bonner A. The Kidney Supportive Care programme: characteristics of patients referred to a new model of care. BMJ Support Palliat Care. 2018 Dec 4; pii: bmjspcare-2018-001630. doi: 10.1136/bmjspcare-2018-001630. [Epub ahead of print] Link
 
Raj R, Ahuja K, Frandsen M, Murtagh FEM, Jose M.Validation of the IPOS-Renal Symptom Survey in Advanced Kidney Disease: A Cross-sectional Study. J Pain Symptom Manage. 2018 Aug;56(2):281-287. doi: 10.1016/j.jpainsymman.2018.04.006. Epub 2018 May 2. Link
 
Saini T, Murtagh FEM, Dupont PJ, McKinnon PM, Hatfield P, Saunders Y. Comparative pilot study of symptoms and quality of life in cancer patients and patients with end stage renal disease. Palliative Medicine 2006; 20:631-636. Link
 
Scherer JS, Harwood K, Frydman JL, Moriyama D, Brody AA, Modersitzki F, Blaum CS, Chodosh J (2019). A Descriptive Analysis of an Ambulatory Kidney Palliative Care Program. J Palliat Med. doi:10.1089/jpm.2018.0647 Link
 
Sexton DJ, Lowney AC, O'Seaghdha CM, Murphy M, O'Brien T, Casserly LF et al. Do patient-reported measures of symptoms and health status predict mortality in hemodialysis? An assessment of POS-S Renal and EQ-5D. Hemodial Int. 2016 Oct;20(4):618-630. doi: 10.1111/hdi.12415. Epub 2016 May 15. Link
 
Thind AK, Levy S, Wellsted D, Willicombe M, Brown EA. Frailty and the psychosocial components of the edmonton frail scale are most associated with patient experience in older kidney transplant candidates - a secondary analysis within the kidney transplantation in older people (KTOP) study. Front Nephrol. 2023 Jan 17;2:1058765. doi: 10.3389/fneph.2022.1058765. PMID: 37675015; PMCID: PMC10479555. Link
 
van der Willik EM, Meuleman Y, Prantl K, van Rijn G, Bos WJW, van Ittersum FJ et al. (2019). Patient-reported outcome measures: selection of a valid questionnaire for routine symptom assessment in patients with advanced chronic kidney disease – a four-phase mixed methods study. BMC Nephrology, 20(1), 344, doi:10.1186/s12882-019-1521-9. Link
 
Wang X, Shi Q, Mo Y, Liu J, Yuan Y. Palliative care needs and symptom burden in younger and older patients with end-stage renal disease undergoing maintenance hemodialysis: A cross-sectional study. Int J Nurs Sci. 2022 Oct 4;9(4):422-429. doi: 10.1016/j.ijnss.2022.09.015. PMID: 36285085; PMCID: PMC9587393. Link
 
Yapa HE, Purtell L, Chambers S, Bonner A. Alterations in symptoms and health-related quality of life as kidney function deteriorates: A cross-sectional study. J Clin Nurs. 2021 Mar 3. doi: 10.1111/jocn.15738. Epub ahead of print. PMID: 33656217 Link
 
  • Other
 
Bajwah S, Ross JR, Wells AU, Mohammed K, Oyebode C, Birring SS, Patel AS, Koffman J, Higginson IJ, Riley J . Palliative care for patients with advanced fibrotic lung disease: a randomised controlled phase II and feasibility trial of a community case conference intervention. Thorax 2015 Sep;70(9):830-9. doi: 10.1136/thoraxjnl-2014-206583. Epub 2015 Jun 23. Link
 
Bernhardt F, Bückmann A, Krüger J, Bauer B, Hofmeister U, Juhra C, Eveslage M, Fischhuber K, Storck M, Brix TJ, Lenz P. Telemedicine Plus Standard Care Versus Standard Care Only in Specialized Outpatient Palliative Care: A Randomized Controlled Noninferiority Trial. Telemed J E Health. 2024 Jan 31. doi: 10.1089/tmj.2023.0621. Epub ahead of print. PMID: 38294865. Link
 
Bolzani A, Ramsenthaler C, Hodiamont F, Burner-Fritsch IS, Bausewein C. Monitoring of Palliative Care Symptoms and Concerns in Specialized Palliative Home Care Using an Electronic Version of the Integrated Palliative care Outcome Scale (Palli-MONITOR): protocol for a mixed-methods study. BMJ Open. 2021 Jun 1;11(6):e042266. doi: 10.1136/bmjopen-2020-042266. PMID: 34078632; PMCID: PMC8173291. Link
 
Fordjour GA, Chow AYM, Hui VK, Chan CLW. Comparative analysis of symptom burdens and influential factors among diverse terminally-ill patients. Ann Palliat Med. 2024 May;13(3):513-530. doi: 10.21037/apm-23-565. Epub 2024 May 14. PMID: 38769801. Link
 
Harding R, Defilippi K, Cameron D. What palliative care-related problems do patients with drug-resistant or drug-susceptible tuberculosis experience on admission to hospital? A cross-sectional self-report study. Palliat Med. 2016 Oct;30(9):862-8. doi: 10.1177/0269216316637240. Link
 
Hermans K, Spruytte N, Cohen J, van Audenhove C, Declercq A. Informed palliative care in nursing homes through the interRAI palliative care instrument: a study protocol based on the medical research council framework. BMC Geriatrics 2014, 14:132. Link
 
Hughes RA, Aspinal F, Higginson IJ, Addington-Hall JM, Dunckley M, Faull C, et al. Assessing palliative care outcomes for people with motor neurone disease living at home. Int J Palliat Nurs 2004 Sep;10(9):449-53. Link
 
Ibrahim AM, Zaghamir DEF, Sultan Sultan HM, Ibrahim FM, Abdel-Aziz HR. Optimizing geriatric palliative care in Egypt: Comprehensive patient and family perspectives. Palliat Support Care. 2024 Feb 21:1-10. doi: 10.1017/S1478951524000221. Epub ahead of print. PMID: 38379421. Link
 
Imai K, Morita T, Yokomichi N, Kawaguchi T, Kohara H, Yamaguchi T, Kikuchi A, Odagiri T, Watanabe YS, Kamura R, Maeda I, Kawashima N, Ito S, Baba M, Matsuda Y, Oya K, Kaneishi K, Hiratsuka Y, Naito AS, Mori M. Efficacy of proportional sedation and deep sedation defined by sedation protocols: A multicenter, prospective, observational comparative study: Protocol-based palliative sedation. J Pain Symptom Manage. 2021 Jun 9:S0885-3924(21)00381-X. doi: 10.1016/j.jpainsymman.2021.06.005. Epub ahead of print. PMID: 34118372. Link
 
Johnston BM, Miller M, Normand C, Cardona M, May P, Lowney AC. Primary data on symptom burden and quality of life among elderly patients at risk of dying during unplanned admissions to an NHS hospital: a cohort study using EuroQoL and the integrated palliative care outcome scale. BMC Palliat Care. 2024 Feb 20;23(1):46. doi: 10.1186/s12904-024-01384-9. PMID: 38374101; PMCID: PMC10877897. Link
 
Lerzynski GA, Allen A, Murray SA. An assessment of the ability of the Palliative Care Outcome Scale (POS) in different forms of care to measure palliative care outcomes in different settings. The use of a palliative care outcome measure in cancer patients attending St Columba's day hospice, Edinburgh, and in patients with lung cancer or heart failure in primary care. Z Palliativmedizin 2004;5(19):19-27. Link
 
Mendonça L, Antunes B, Rigor J, Martins-Mendes D, Monteiro-Soares M. Characterizing palliative care needs in people with or at risk of developing diabetic foot ulcers. Ther Adv Endocrinol Metab. 2022 Nov 14;13:20420188221136770. doi: 10.1177/20420188221136770. PMID: 36406834; PMCID: PMC9666889. Link
 
Nicholson C, Davies JM, George R, Smith B, Pace V, Harris L, Ross J, Noble J, Hansford P, Murtagh FEM. What are the main palliative care symptoms and concerns of older people with multimorbidity?-a comparative cross-sectional study using routinely collected Phase of Illness, Australia-modified Karnofsky Performance Status and Integrated Palliative Care Outcome Scale data. Ann Palliat Med. 2018 Jul 18. pii: apm.2018.06.07. doi: 10.21037/apm.2018.06.07. [Epub ahead of print] Link
 
Runacres F, Mathers S, Lee SC, Hearn R, Gregory S, Bear N, Aoun S. Motor neurone disease: A point-prevalence study of patient reported symptom prevalence, severity and palliative care needs. Palliat Med. 2023 Aug 8:2692163231191545. doi: 10.1177/02692163231191545. Epub ahead of print. PMID: 37553906. Link
 
Seibl-Leven M, von Reeken C, Goldbrunner R, Grau S, Ruge MI, Galldiks N, Dunkl V, Kocher M, Voltz R, Golla H. Clinical routine assessment of palliative care symptoms and concerns and caregiver burden in glioblastoma patients: an explorative field study. J Neurooncol. 2018 Feb 20. doi: 10.1007/s11060-018-2800-1. [Epub ahead of print] Link
 
Selman L, Harding R, Higginson IJ, Agupio G, Dinat N, Downing J, Gwyther L, Gysels M, Ikin B, Mashao T, Mcdaniel B, Mmoledi K, Speck P. 2012. Encompass Collaborative Facilitators of and Barriers to Spiritual Well-being among Patients Receiving Palliative Care in Sub-Saharan Africa. Palliative Medicine. 26(4):404 (Abstract: OA27).
 
Selman LE. 2012. How Do We Measure Spiritual Outcomes? Lessons from Exploring the Construct of Peace in an African Setting. Palliative Medicine. 26 (4): 402 (Abstract: INV14).
 
Verhofstede R, Smets T, Cohen J, Costantini M, Van Den Noortgate N, Deliens L. Improving end-of-life care in acute geriatric hospital wards using the Care Programme for the Last Days of Life: study protocol for a phase 3 cluster randomized controlled trial. BMC Geriatr. 2015 Feb 22;15:13. doi: 10.1186/s12877-015-0010-7. Link
 
Vieira da Silva SN, Baptista P, Fonseca Silva I, Freire E, Pessegueiro Miranda H. Palliative Care in Advanced Liver Disease: Similar or Different Palliative Care Needs in Patients with a Prospect of Transplantation? Prospective Study from a Portuguese University Hospital and Transplantation Center. GE Port J Gastroenterol. 2023 Jun 8;30(3):204-212. doi: 10.1159/000522172. PMID: 37387715; PMCID: PMC10305251. Link
 
 
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