Impact of therapy and disease‐related symptoms on health‐related quality of life in patients with follicular lymphoma: results of the population‐based <scp>PHAROS</scp>‐registry

Oerlemans, Simone; Issa, Djamila E.; Broek, Esther C. van den; Nijziel, Marten R.; Coebergh, Jan Willem; Mols, Floortje; Poll‐Franse, Lonneke V. van de

doi:10.1111/ejh.12335

Cited by 24 publications

(31 citation statements)

References 30 publications

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“…MyPOS performs well as a tool for differentiating between patient groups. In line with existing evidence, patients with lower performance status and those on active treatment had worse symptoms and function . Total MyPOS and MyPOS subscale scores also behaved as expected against existing validated measures, the FACT‐LYM and EORTC‐QLQ‐C30.…”

Section: Discussionsupporting

confidence: 82%

“…Although the MyPOS was originally developed for use in patients with myeloma, similarities between the two diseases and a lack of FL‐specific tools, led us to validate the MyPOS in FL. Fatigue, pain, constipation, peripheral neuropathy, dyspnoea, sleep problems, sexual dysfunction, reduced physical and social functioning, and financial problems are common across both patient groups . The successful validation of MyPOS in FL supports further development and validation of the tool for use in other indolent NHL conditions and chronic haematological malignancies such as CLL and CML.…”

Section: Discussionmentioning

confidence: 82%

“…Patient's ‘main problems and concerns’ were comprehensively covered. Worry about disease or treatment was prominent, reaffirming the importance of comprehensively capturing these issues in the MyPOS . Weight‐loss, problems sleeping, sweating and lower limb swelling are identified as potential areas for extending the symptom list, and should be explored in further qualitative interviews with FL patients.…”

Section: Discussionmentioning

confidence: 91%

“…Together with survival, improved HRQOL is a priority for haematological cancer patients . Patient‐reported monitoring of HRQOL facilitates clinician‐patient communication about how patients perceive their physical and emotional symptoms, offering the optimal avenue to support patients and effect outcomes .…”

Section: Discussionmentioning

confidence: 99%

“…Despite these long‐term effects, research on HRQOL in NHL and FL patients is lacking. Only four studies so far have specifically focused on FL patients, documenting the effect of different modes of treatment on return to work and emotional well‐being . Two systematic reviews of HRQOL in NHL present overall results for this group of haematological cancer patients .…”

Section: Introductionmentioning

confidence: 99%

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The Myeloma Patient Outcome Scale is the first quality of life tool developed for clinical use and validated in patients with follicular lymphoma

Davies

Osborne

Edmonds

et al. 2017

European J of Haematology

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ObjectivesThe development of novel agents and an ageing population has led to an increasing number of patients with follicular lymphoma (FL) living longer with their disease. Health‐related quality of life (HRQOL) is a priority for patients and should guide clinical decisions. The Myeloma Patient Outcome Scale (MyPOS), originally developed for myeloma, was validated in a cross‐sectional survey recruiting 124 FL patients.MethodsContent and construct validity, structural validity using confirmatory factor analyses, reliability and acceptability were evaluated.ResultsThree subscales were indicated: symptoms and function, emotional response, and healthcare support. MyPOS symptom and function scores were higher (worse) in participants with poorer ECOG performance status (F=26.2, P<.000) and discriminated between patients on and off treatment. Good convergent and discriminant validity in comparison to the EORTC‐QLQ‐C30 and FACT‐Lym were demonstrated. Internal consistency was good; α coefficient 0.70‐0.95 for the total MyPOS score and subscales.ConclusionThe MyPOS is valid, reliable and acceptable, and can be used to support clinical care of FL patients. This is the first measurement tool developed specially for use in clinical practice that has been validated for use in people with FL. Further longitudinal validation is now required to support its use in outcome measurement.

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Section: Discussionsupporting

confidence: 82%

Section: Discussionmentioning

confidence: 82%

Section: Discussionmentioning

confidence: 91%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

The Myeloma Patient Outcome Scale is the first quality of life tool developed for clinical use and validated in patients with follicular lymphoma

Davies

Osborne

Edmonds

et al. 2017

European J of Haematology

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Factors of emotional distress in lymphoma: A systematic review

2023

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Objective Distress is prevalent among lymphoma patients/survivors. Current processes of distress identification rely on self‐reporting by patients/survivors, which may be limited by their willingness to report symptoms. To help identify patients/survivors at greater risk, this systematic review aims to comprehensively review factors that may contribute to distress in lymphoma patients/survivors. Methods PubMed was systematically searched for peer‐reviewed primary articles (1997–2022) consisting of standardised keywords “lymphoma” and “distress.” Information from 41 articles was integrated via narrative synthesis. Results Consistent risk factors of distress include younger age, relapsed disease, and greater comorbidities and symptom burden. Active treatment and the transition from treatment to post‐treatment could be challenging phases. Adequate social support, adaptive adjustment to cancer, engaging in work and healthcare professionals' support may mitigate distress. There is some evidence that older age may be associated with greater depression and life changes/experiences may shape how individuals cope with lymphoma. Gender and marital status were not robust predictors of distress. Other clinical, psychological and socioeconomic factors are understudied or have mixed findings. Conclusions While several factors of distress align with that of other cancers, more research is needed to identify significant factors of distress in lymphoma patients/survivors. The identified factors may support clinicians in identifying distressed lymphoma patients/survivors and providing interventions where necessary. The review also highlights avenues for future research and a need to routinely collect data on distress and its factors in registries.

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Burden of illness of follicular lymphoma and marginal zone lymphoma

Monga¹,

Nastoupil

Garside

et al. 2018

Ann Hematol

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Impact of therapy and disease‐related symptoms on health‐related quality of life in patients with follicular lymphoma: results of the population‐based PHAROS‐registry

Abstract: Alertness for persistent symptoms that occur during and after treatment of FL patients is needed and may help to avoid lasting negative influence on their HRQoL.

Cited by 24 publications

References 30 publications

The Myeloma Patient Outcome Scale is the first quality of life tool developed for clinical use and validated in patients with follicular lymphoma

The Myeloma Patient Outcome Scale is the first quality of life tool developed for clinical use and validated in patients with follicular lymphoma

Factors of emotional distress in lymphoma: A systematic review

Burden of illness of follicular lymphoma and marginal zone lymphoma

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