Physical and mental health survey of 20 patients with Sézary syndrome using the Medical Outcomes Study 36‐Item Short‐Form Health Survey

Bouwhuis, S.; Gonzalez-Arriaza, H. L.; McEvoy, M.; Davis, Marie-Claire

doi:10.1046/j.1468-3083.2003.00823.x

Cited by 9 publications

(31 citation statements)

References 2 publications

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“…Comparison of our SF-36 results with other dermatological diseases (Fig. S1 1 ) (23)(24)(25)(26)(27), shows that on the PCS scale JEB and RDEB have one of the worst recorded HRQoL score, only to be surpassed by psoriatic arthritis (26). EBS has a HRQoL score similar to atopic dermatitis, and DDEB similar to psoriasis (26).…”

Section: Discussionmentioning

confidence: 75%

Health-related Quality of Life in Epidermolysis Bullosa: Validation of the Dutch QOLEB Questionnaire and Assessment in the Dutch Population

Yuen¹,

Frew²,

Veerman³

et al. 2014

Acta Derm Venerol

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Wing Yan Yuen, Department of Dermatology, University Medical Center Groningen, Hanzeplein 1, NL-9700 RB Groningen, The Netherlands. E-mail: w.y.yuen@umcg.nl Epidermolysis bullosa (EB) consists of a spectrum of heritable trauma-induced blistering diseases of skin and mucous membranes (1). Many subtypes exist, and their clinical severity is variable, ranging from an occasional palmoplantar blister to childhood lethality (1). The health-related quality of life (HRQoL) is the impact of a disease on the physical, psychological, and social health of a patient (2). Defining HRQoL in EB patients is important in patient care and management (3). Furthermore, in recent years more focus has been placed on finding specific treatments for EB and measuring HRQoL can help in assessing the efficacy of these new treatment modalities (4, 5). Also, measuring and comparing HRQoL to other diseases can help assign funding to this rather unknown and rare disorder (4, 6). Measuring HRQoL is complicated by the wide range of phenotypes in EB, which all have their own clinical severity (3). Several studies have focused on qualitatively describing the impact of EB on patients' lives (7-11). Quantitative measurement of HRQoL has been performed using both generic and dermatology-specific instruments in EB patients (6, 12-15). However, due to ceiling effects and content validity issues of these instruments, the accuracy of the measurements is questionable. It has been hypothesised that, especially in the more severe EB subtypes, there has been an overestimation of the HRQoL (3). To overcome these problems, Frew et al. (3) developed and validated an EB-specific HRQoL measurement tool for older children and adults that can be used across all EB subtypes, called the QOLEB (quality of life in EB). Translation of the QOLEB, which was created and validated in English in Australia, to other cultures and languages may provide reliable comparisons of HRQoL in EB and the efficacy of clinical interventions across different countries (3). The aim of this study was to develop a validated and reliable QOLEB in Dutch, and to assess HRQoL in Dutch EB patients. MATERIALS AND METHODSThis study was performed at the Center for Blistering Diseases at the University Medical Center Groningen, which is the single national referral centre for EB in the Netherlands. Ethical approval was granted by the Medical Ethical Committee of the University Medical Center Groningen in the Netherlands. A signed consent form was obtained from all participating patients. Study measurement toolsThe English QOLEB is a validated and reliable adult EBspecific HRQoL tool consisting of a 17-item questionnaire, and it was developed by 2 of the authors (JWF and DFM) (3). The QOLEB measures 2 factors: functioning (questions 1-7, 9-10, 12-13, 15) and emotions (question 8, 11, 14, 16-17). For each question 4 optional answers exist that are scored from 0 to 3 points, in which a higher score represents a worse HRQoL. The functioning scale ranged from 0-36, the emotions scale from 0-15, and the ove...

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Section: Discussionmentioning

confidence: 75%

Health-related Quality of Life in Epidermolysis Bullosa: Validation of the Dutch QOLEB Questionnaire and Assessment in the Dutch Population

Yuen¹,

Frew²,

Veerman³

et al. 2014

Acta Derm Venerol

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“…4,5,[12][13][14][15][16][17][18][19][20][21][22][23][24][25][26][27] The PRISMA flowchart is shown in Figure 1. 4,5,[12][13][14][15][16][17][18][19][20][21][22][23][24][25][26][27] The PRISMA flowchart is shown in Figure 1.…”

Section: Resultsmentioning

confidence: 99%

“…A total of 2960 studies were identified by the search strategy, of which 18 were eligible for inclusion. 4,5,[12][13][14][15][16][17][18][19][20][21][22][23][24][25][26][27] The PRISMA flowchart is shown in Figure 1.…”

Section: Resultsmentioning

confidence: 99%

“…Five papers reported studies of patients' needs and experiences only, without an intervention (Table 2). 4,5,[25][26][27] Thirteen papers reported studies of an intervention that included an outcome measure related to palliative or supportive care ( Table 3). [12][13][14][15][16][17][18][19][20][21][22][23][24] All the studies reported were phase II, single-group studies.…”

Section: Resultsmentioning

confidence: 99%

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What are the supportive and palliative care needs of patients with cutaneous T-cell lymphoma and their caregivers? A systematic review of the evidence

et al. 2014

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No measure is routinely used to measure supportive and palliative care outcomes in CTCL. Physical needs, particularly pruritus, were reported commonly; however, qualitative evidence of experience is limited. Caregivers' needs are rarely explored. To compare outcomes from clinical studies, a single multidimensional tool used in routine practice would be useful. Further work is needed to explore a model of service that meets the specific physical, psychosocial and spiritual needs of this group of patients and their carers.

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“…CTCL has been reported to negatively affect multiple aspects of patients' health-related quality of life (HRQoL), including emotional, social, and physical functioning [16][17][18][19][20][21][22]. In addition, CTCL can impact family life and relationships [17,19].…”

Section: Introductionmentioning

confidence: 99%

The clinical and humanistic burden of cutaneous T-cell lymphomas and response to conventional and novel therapies: results of a systematic review

Dalal

Mitchell

McCloskey

et al. 2020

Expert Review of Hematology

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Objectives: To summarize the impact of relapsed/refractory primary cutaneous T-cell lymphomas (CTCL) on quality of life (QoL) and the efficacy of available treatments in two systematic reviews (SRs). Methods: Searches were performed on 16 January 2018 and 23 January 2018, respectively, in Medline, Medline in process, the Cochrane database, and EconLit. Studies reporting QoL outcomes in adults with CTCL or treatment efficacy in relapsed/refractory CTCL were included. Results: Based on 15 QoL studies, CTCL symptoms/complications negatively affect patients' physical, emotional, and social functioning. Skin problems pose considerable symptom burden, while advanced disease stage is associated with poorer QoL. CTCL negatively affects caregivers, primarily through family dynamics and relationships. The clinical efficacy SR included 72 publications covering 23 therapies. Overall response rate (ORR) ranged from 14% (belinostat) to 95% (total skin electron beam therapy). ORRs >50% were reported for several therapies including brentuximab vedotin (50-78%) and bexarotene (39-86%). Over half (13 of 23 therapies) had ORRs <30%. Median progression-free survival varied between treatments (3.5-116.4 months) and was >20 months for brentuximab vedotin and alemtuzumab. Conclusion: CTCL negatively affects patients' and caregivers' QoL. A considerable proportion of patients have no response or no sustainable response to current treatments.

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Physical and mental health survey of 20 patients with Sézary syndrome using the Medical Outcomes Study 36‐Item Short‐Form Health Survey

Cited by 9 publications

References 2 publications

Health-related Quality of Life in Epidermolysis Bullosa: Validation of the Dutch QOLEB Questionnaire and Assessment in the Dutch Population

Health-related Quality of Life in Epidermolysis Bullosa: Validation of the Dutch QOLEB Questionnaire and Assessment in the Dutch Population

What are the supportive and palliative care needs of patients with cutaneous T-cell lymphoma and their caregivers? A systematic review of the evidence

The clinical and humanistic burden of cutaneous T-cell lymphomas and response to conventional and novel therapies: results of a systematic review

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