Quality of Life of Patients with Advanced Cancer and Acquired Immune Deficiency Syndrome and their Family Caregivers

Sherman, Deborah Witt; Ye, Xiang Y.; McSherry, Christina Beyer; Calabrese, Miriam; Gatto, Maria Alice Fortes

doi:10.1089/jpm.2006.9.948

Cited by 29 publications

(31 citation statements)

References 34 publications

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“…Gill et al (56) used semiparametric mixed modeling to determine trajectories of disability across conditions, but found disability could not be grouped according to disease. Others conducted formal statistical analysis of symptom data but reported only presence or absence of symptoms rather than overall symptom distress (57), summarized the complexity of longitudinal data by using change scores (58,59), or concentrated on quality of life (60,61).…”

Section: Discussionmentioning

confidence: 99%

Trajectories of Illness in Stage 5 Chronic Kidney Disease

Murtagh

Sheerin

Addington‐Hall

et al. 2011

Clinical Journal of the American Society of Nephrology

104

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SummaryBackground and objectives The illness trajectory in the last year of life in advanced (stage 5) chronic kidney disease is poorly understood. Mapping the trajectory of patient-centered outcomes could facilitate better care. The objectives of this study were to determine trajectories of symptoms and wider health-related concerns in the last year of life in stage 5 chronic kidney disease, managed without dialysis.Design, setting, participants, & measurements A longitudinal symptom survey in three UK renal units was used, using the Memorial Symptom Assessment Scale-Short Form and core Palliative Care Outcome Scale. Average (using mean scores over time) and individual (using individual scores over time, with visual graphical analysis) trajectories were mapped.Results Seventy-four patients (mean age, 81 Ϯ 6.8 years) were recruited; 49 died during follow-up. Average trajectories showed moderate symptom distress and health-related concerns, with marked increase in the last 2 months of life. Visual graphical analysis enabled stable, increasing, or fluctuant individual trajectories to be identified. The proportion following these trajectories varied between outcome measures; regarding symptoms, 50% followed a stable pattern, 24% increased, and 21% fluctuated compared with 26%, 57%, and 21%, respectively, for health-related concerns. Inter-rater agreement in grouping trajectories was high ( statistic, 0.80 and 0.86, respectively). ConclusionsIn the 2 months before death, patients reported a sharp increase in symptom distress and health-related concerns. Health care should anticipate and address this increase, which may indicate the patients is approaching death. Considerable individual variation and flexibility/responsiveness of care is important: one size of service does not fit all.

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Section: Discussionmentioning

confidence: 99%

Trajectories of Illness in Stage 5 Chronic Kidney Disease

Murtagh

Sheerin

Addington‐Hall

et al. 2011

Clinical Journal of the American Society of Nephrology

104

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“…The combination of anticipated loss, prolonged psychological distress, and the physical demands of caregiving can seriously compromise FCs' quality of life (QOL) when they provide end-of-life care to a terminally ill cancer patient [1,[12][13][14]. Such negative impact on QOL may increase over time [15].…”

Section: Introductionmentioning

confidence: 99%

Trajectory and determinants of the quality of life of family caregivers of terminally ill cancer patients in Taiwan

Tang

Chen

2008

Qual Life Res

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“…Three of the five papers with at least two time points did not attempt to assess test-retest reliability [15,21,23].…”

Section: Test-retest Reliabilitymentioning

confidence: 99%

“…No information pertaining to acceptability was provided by four studies [10,20,21,23]. In five studies, acceptability was appraised as only partially evidenced due to high dropout or incomplete data [11,12,14,15,22], surprising for the QOLLTI-F which had thoroughly tested acceptability in the development phase [11].…”

Section: Acceptabilitymentioning

confidence: 99%

1715 Patient reported outcome measures for cancer caregivers: A systematic review

Shilling¹,

Matthews²,

Jenkins³

et al. 2015

European Journal of Cancer

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Purpose Informal caregivers provide invaluable help and support to people with cancer. As treatments extend survival and the potential burdens on carers increase, there is a need to assess the impact of the role. This systematic review identified instruments that measure the impact of caregiving, evaluated their psychometric performance specifically in cancer and appraised the content. Methods A two-stage search strategy was employed to:(1) identify instruments that measure the impact of caregiving, and (2) run individual searches on each measure to identify publications evaluating psychometric performance in the target population. Searches were conducted in MEDLINE, EMBASE, CINAHL and PsycINFO and restricted to English for instrument used and article language. Psychometric performance was evaluated for content and construct validity, internal consistency, test-retest reliability, precision, responsiveness and acceptability. Individual scale items were extracted and systematically categorised into conceptual domains. Results Ten papers were included reporting on the psychometric properties of eight measures. Although construct validity and internal consistency were most frequently evaluated, no study comprehensively evaluated all relevant properties. Few studies met our inclusion criteria so it was not possible to consider the psychometric performance of the measures across a group of studies. Content analysis resulted in 16 domains with 5 overarching themes: lifestyle disruption; well-being; health of the caregiver; managing the situation and relationships. Conclusions Few measures of caregiver impact have been subject to psychometric evaluation in cancer caregivers. Those that have do not capture well changes in roles and responsibilities within the family and career, indicating the need for a new instrument.

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Quality of Life of Patients with Advanced Cancer and Acquired Immune Deficiency Syndrome and their Family Caregivers

Cited by 29 publications

References 34 publications

Trajectories of Illness in Stage 5 Chronic Kidney Disease

Trajectories of Illness in Stage 5 Chronic Kidney Disease

Trajectory and determinants of the quality of life of family caregivers of terminally ill cancer patients in Taiwan

1715 Patient reported outcome measures for cancer caregivers: A systematic review

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