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Patient-reported measures of well-being in older multiple myeloma patients: use of secondary data source.

ABSTRACT: BACKGROUND:Changes in well-being of patients with multiple myeloma (MM) before and after diagnosis have not been quantified. AIMS:Explore the use of secondary data to examine the changes in the well-being of older patients with MM. METHODS:We used the Health and Retirement Study (HRS), linked to Medicare claims to identify older MM patients. We compared patient-reported measures (PRM), including physical impairment, sensory impairment, and patient experience (significant pain, self-rated health, depression) in the interviews before and after MM diagnosis using McNemar's test. We propensity-matched each MM patient to five HRS participants without MM diagnosis based on baseline characteristics. We compared the change in PRM between the MM patients and their matches. RESULTS:We identified 92 HRS patients with MM diagnosis (mean age?=?74.6, SD?=?8.4). Among the surviving patients, there was a decline in well-being across most measures, including ADL difficulty (23% to 40%, p value?=?0.016), poor or fair self-rated health (38% to 61%, p value?=?0.004), and depression (15% to 30%, p value?=?0.021). Surviving patients reported worse health than participants without MM across most measures, including ADL difficulty (40% vs. 27%, p value?=?0.04), significant pain (38% vs. 22%, p value?=?0.01), and depression (29% vs. 11%, p value?=?0.003). DISCUSSION:Secondary data were used to identify patients with MM diagnosis, and examine changes across multiple measures of well-being. MM diagnosis negatively affects several aspects of patients' well-being, and these declines are larger than those experienced by similar participants without MM. CONCLUSION:The results of this study are valuable addition to understanding the experience of patients with MM, despite several data limitations.

SUBMITTER: Cenzer I

PROVIDER: S-EPMC7260254 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

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Patient-reported measures of well-being in older multiple myeloma patients: use of secondary data source.

Cenzer Irena I Berger Karin K Rodriguez Annette M AM Ostermann Helmut H Covinsky Kenneth E KE

Aging clinical and experimental research 20200122 6

<h4>Background</h4>Changes in well-being of patients with multiple myeloma (MM) before and after diagnosis have not been quantified.<h4>Aims</h4>Explore the use of secondary data to examine the changes in the well-being of older patients with MM.<h4>Methods</h4>We used the Health and Retirement Study (HRS), linked to Medicare claims to identify older MM patients. We compared patient-reported measures (PRM), including physical impairment, sensory impairment, and patient experience (significant pa ...[more]

PMID: 31970671

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Project description:ObjectivesTo identify the facilitators and barriers to implementing patient-reported outcome measures (PROMs) in third sector organisations (TSOs) delivering health and well-being services.DesignA qualitative interview study. Participants were recruited using purposive, opportunistic and snowballing methods. Framework analysis was used.SettingTSOs including charities, community groups and not-for-profit organisations in England, UK.ParticipantsThirty interviewees including service users, TSO front-line workers and managers, commissioners of TSOs and other stakeholders such as academic researchers.ResultsTSOs primarily used PROMs because of pressures arising from the external funding context. However, organisations often struggled to implement PROMs, rarely getting the process right first time. Facilitators for implementation included having an implementation lead committed to making it work, investing resources in data management systems and support staff and taking a collaborative approach to designing the PROMs process. The latter helped to ensure an appropriate PROMs process for the specific TSO including choosing a suitable measure and planning how data would be collected, processed and used. There was a dilemma about whether TSOs should use standardised well-being measures (eg, the Warwick-Edinburgh Mental Well-being Scale) or design their own PROM. Not all TSOs sustained the collection and reporting of PROMs over time because this required a change in organisational culture to view PROMs as beneficial for the TSO and PROMs becoming part of front-line workers' job specifications.ConclusionsTSOs are trying to use PROMs because they feel they have no choice but often struggle with implementation. Having an implementation lead, designing an appropriate process, investing resources, training staff and taking mitigating action to address potential barriers can facilitate implementation. Some of the findings are consistent with the experiences of more clinical services so appear relevant to the implementation of PROMs irrespective of the specific context.

Project description:ObjectiveThe subjective experience of psychotic patients toward treatment is a key factor in medication adherence, quality of life, and clinical outcome. The aim of this study was to assess the subjective well-being in patients with schizophrenia and to examine its relationship with the presence and severity of depressive symptoms.MethodsA multicenter, cross-sectional study was conducted with clinically stable outpatients diagnosed with schizophrenia. The Subjective Well-Being under Neuroleptic Scale - short version (SWN-K) and the Calgary Depression Scale for Schizophrenia (CDSS) were used to gather information on well-being and the presence and severity of depressive symptoms, respectively. Spearman's rank correlation was used to assess the associations between the SWN-K total score, its five subscales, and the CDSS total score. Discriminative validity was evaluated against that criterion by analysing the area under the curve (AUC).ResultsNinety-seven patients were included in the study. Mean age was 35 years (standard deviation = 10) and 72% were male. Both the total SWN-K scale and its five subscales correlated inversely and significantly with the CDSS total score (P < 0.0001). The highest correlation was observed for the total SWN-K (Spearman's rank order correlation [rho] = -0.59), being the other correlations: mental functioning (-0.47), social integration (-0.46), emotional regulation (-0.51), physical functioning (-0.48), and self-control (-0.41). A total of 33 patients (34%) were classified as depressed. Total SWN-K showed the highest AUC when discriminating between depressive severity levels (0.84), followed by emotional regulation (0.80), social integration (0.78), physical functioning and self-control (0.77), and mental functioning (0.73). Total SWN-K and its five subscales showed a significant linear trend against CDSS severity levels (P < 0.001).ConclusionThe presence of moderate to severe depressive symptoms was relatively high, and correlated inversely with patients' subjective well-being. Routine assessment of patient-reported measures in patients with schizophrenia might reduce potential discrepancy between patient and physician assessment, increase therapeutic alliance, and improve outcome.

Dataset Information

Patient-reported measures of well-being in older multiple myeloma patients: use of secondary data source.

Publications

Patient-reported measures of well-being in older multiple myeloma patients: use of secondary data source.

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