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Selected Publication:
Lackner, A.
Patient reported outcomes in primary Sjögren's Syndrome
Doktoratsstudium der Medizinischen Wissenschaft; Humanmedizin; [ Dissertation ] Graz Medical University; 2017. pp.70.
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- Authors Med Uni Graz:
- Lackner Angelika
- Advisor:
- Dejaco Christian
- Graninger Monika
- Graninger Winfried
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- Abstract:
- Background/objectives: Patients with primary Sjögren’s Syndrome (PSS) are affected by glandular and extraglandular manifestations leading to physical and mental impairment. How these factors affect the health related quality of life (HRQL) of these patients is largely unexplored. Disease activity scores have been developed but there is no disease-specific HRQL questionnaire available so far. The aim of this study was 1. to investigate patients’ perspectives and needs influencing HRQL and 2. to develop a questionnaire for HRQL in PSS patients and test its psychometric properties. Methods: This study was divided into two parts: (1) qualitative interviews within focus-groups and (2) development and testing of the psychometric properties of the HRQL questionnaire for PSS patients (PSS-QoL). In the first part, 20 consecutive PSS patients were recruited from the PSS cohort of the Medical University Graz. Six focus group sessions were performed; all interviews were audio-recorded and transcribed verbatim. A modified meaning condensation procedure was used to analyse the data. In part two of the study, the PSS-QoL was developed based on the concepts identified in the group interviews and with focus on two main topics: physical and psychosocial dimension. The first draft of this questionnaire was evaluated by clinicians and patients using semi-structured interviews. Based on their feedback, a revised questionnaire was constructed. Subsequently, psychometric testing of the questionnaire was performed in 75 PSS patients. For testing of internal consistency Crohnbach’s a was used. Convergent construct validity was tested by correlating the scores with the ESSPRI and the EQ-5D. Reliability was examined by asking patients who considered themselves to be in a stable disease status to complete the questionnaire 1-2 weeks apart. Results: Study part one: All patients were female. The number of patients in each focus group session ranged from 3-4. The identified concepts were grouped into three dimensions: 1. physical dimension, 2. psychological & emotional challenges and 3. social life & daily living. An inter-dependency of the three dimensions was identified. The concepts most commonly reported were pain, dryness and complaints related to these symptoms which all belonged to the physical dimension. Study part two: The PSS-QoL revealed a high internal consistency with a Crohnbach’s a of 0.892. A moderate correlation of the PSS-QoL with the ESSPRI (corrcoeff=0.625) and the EQ-5D (EQ5D-pain/discomfort; corrcoeff=0.531) was also found confirming convergent construct validity. Reliability testing of the PSS-QoL yielded an ICC of 0.958 (95% CI 0.926 to 0.981). In comparison, the ICC for EQ-5D in this population was 0.854 (95% CI 0.735 to 0.933). Conclusion: We found that three interrelated dimensions (1. physical dimension, 2. psychological & emotional challenges and 3. social life & daily living) best reflected patients’ experiences and feelings concerning PSS. HRQL in PSS patients was influenced not only by dryness but also by psychological and social burden. A questionnaire to assess the HRQL in PSS patients has been developed and tested for its psychometric properties. The PSS-QoL might enable a better and more comprehensive assessment on patients‘ HRQL in PSS. Multicentre studies validating the new PSS-QoL are now needed.