Somatically ill persons’ self-nominated quality of life domains: review of the literature and guidelines for future studies

Taminiau-Bloem, Elsbeth F.; Visser, Margreet; Tishelman, Carol; Koeneman, Margot A.; Zuuren, F.J. van; Sprangers, Mirjam A. G.

doi:10.1007/s11136-009-9569-9

Cited by 7 publications

(6 citation statements)

References 61 publications

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“…This cohort also reported high rates of pain disorder, although we cannot determine whether pain is a psychosomatic manifestation of an underlying psychiatric disorder, HIV disease, or another process. 27 Nevertheless, it negatively affects quality of life. Given that this interview was the first time, many of the respondents were able to explore symptoms of psychiatric illness, manifestations of pain and depression may be similar.…”

Section: Discussionmentioning

confidence: 99%

Psychiatric Diagnoses among an HIV-Infected Outpatient Clinic Population

Shacham

Önen

Donovan

et al. 2014

J Int Assoc Provid AIDS Care

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As individuals with HIV infection are living longer, the management of psychiatric disorders has increasingly been incorporated into comprehensive care. Individuals were recruited from an outpatient HIV clinic to assess the prevalence and related associations of current psychiatric disorders and biomarkers. Of the 201 participants who completed the interviews, the median age was 43.5 years, and the majority was male and African American. Most were receiving HIV therapy and 78% of those had achieved virologic suppression. Prevalent psychiatric diagnoses included major depressive disorder, generalized anxiety, and agoraphobia. Alcohol and cocaine/crack abuse and dependence were common substance use disorders. Current receipt of HIV therapy was less common among those diagnosed with generalized anxiety disorder. Agoraphobia was the only disorder associated with unsuppressed viral load. Psychiatric and substance use disorders are highly prevalent among an urban HIV clinic population, although we identified few associations between psychiatric diagnoses and HIV diseases status.

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Section: Discussionmentioning

confidence: 99%

Psychiatric Diagnoses among an HIV-Infected Outpatient Clinic Population

Shacham

Önen

Donovan

et al. 2014

J Int Assoc Provid AIDS Care

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“…The SEIQoL-DW offers an inductive method to collect and analyzing data, which is seldom strictly adhered to [ 38 , 56 ]. In this study, participants were asked to nominate areas of importance all by themselves, without using the commonly applied prompt-list with pre-defined areas possible to nominate as important for QOL.…”

Section: Discussionmentioning

confidence: 99%

Pain, disease severity and associations with individual quality of life in patients with motor neuron diseases

et al. 2021

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Background Up to 85% of people with motor neuron disease (MND) report pain, but whether pain has negative impact on quality of life is unclear. The aim was to study associations between pain, disease severity and individual quality of life (IQOL) in patients with MND. Methods In this cross sectional study, 61 patients were recruited from four multidisciplinary teams in Sweden, whereof 55 responded to the pain measure (The Brief Pain Inventory – Short form) and were included in the main analyses. Disease severity was measured with the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised Version, and individual quality of life was measured with a study-specific version of the Schedule for the Evaluation of Individual Quality of Life - Direct Weighting. Results Forty-one (74%) of the participants who answered BPI-SF (n = 55) reported pain. Thirty-nine (71%) of those reported pain during the past 24 h. The severity of pain was on average moderate, with eight participants (14%) reporting severe pain (PSI ≥ 7). Satisfaction with IQOL for the entire sample was good (scale 1-7, where 1 equals poor quality of life): median 5, interquartile range (IQR) 2.75 and there was no difference in satisfaction with IQOL between those reporting pain/not reporting pain (median 5, IQR 2/median 5, IQR 3.5, Mann-Whitney U = 249, p = 0.452). There was neither any correlation between pain severity and satisfaction with IQOL, nor between disease severity and satisfaction with IQOL. Conclusions The results add to the hypothesis that associations between non-motor symptoms such as pain prevalence and pain severity and IQOL in MND are weak. Pain prevalence was high and the results pointed to that some participants experienced high pain severity, which indicate that pain assessments and pain treatments tailored to the specific needs of the MND population should be developed and scientifically evaluated.

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“…Similar findings are reported for more heterogeneous samples of patients with different malignancies. The special meaning of social relationships for quality of life – also in a life situation of severe illness, when health-related aspects have a strong presence and everyday relevance – is underlined by several publications where relationships were the or among the most nominated areas relevant for the quality of life (Fegg et al 2005; Wettergren et al 2008; Wettergren et al 2003; Taminiau-Bloem et al 2010). These data hint to the limits of quality of life conceptions that focus too strongly on health-related aspects.…”

Section: Discussionmentioning

confidence: 99%

Individual quality of life in patients with multiple myeloma

2013

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ObjectiveThe situation of patients with multiple myeloma, whose treatment often implies high-dose chemotherapy and stem cell transplantation that can be associated with severe symptoms and psychological distress, has gained attention in recent psychooncological research. This study followed an idiographic approach in order to identify the areas of life most relevant for the interviewed myeloma patients’ quality of life (QoL) as well as their current satisfaction with these.Methods64 patients took part in semi-structured interviews according to the SEIQoL-DW Manual (Schedule for the Evaluation of Individual Quality of Life – Direct Weighting). Visual analogue scales (VAS) were used to gain additional information about a general assessment of the present QoL. Qualitative data evaluation preceded quantitative processing. Groups were compared according to the time elapsed since diagnosis regarding specified areas of life, satisfaction with these and their relative weighting. SEIQoL-DW-indices were correlated to the VAS to reflect on an interindividually comparable parameter.ResultsPersonal social relationships were mentioned significantly more often as important for QoL than health-related aspects, and in direct comparison were weighted significantly stronger. Regarding the change of areas relevant for QoL over the time elapsed since diagnosis, there was a significant difference between groups concerning the area of spirituality. Satisfaction differed significantly between groups for the field of leisure.ConclusionThe results for the interviewed patients with multiple myeloma point out the need to take into account the importance of social and individual aspects when reflecting on QoL. Similar findings have been reported for different samples. The relevance of an individualized approach is illustrated by the fact that individually named areas of life were rated comparatively strongly in their importance for the patients’ QoL. An overall assessment for the current QoL by means of VAS is regarded as an adequate supplement to the SEIQoL-Profile and an alternative to the SEIQoL-DW-Index.

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Somatically ill persons’ self-nominated quality of life domains: review of the literature and guidelines for future studies

Cited by 7 publications

References 61 publications

Psychiatric Diagnoses among an HIV-Infected Outpatient Clinic Population

Psychiatric Diagnoses among an HIV-Infected Outpatient Clinic Population

Pain, disease severity and associations with individual quality of life in patients with motor neuron diseases

Individual quality of life in patients with multiple myeloma

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