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Assessing Symptom Burden and Health-Related Quality of Life in patients living with arrhythmia and ASTA: Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia
Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Heart and Medicine Centre, Department of Cardiology UHL.
2011 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: Health-Related Quality of Life (HRQOL) can be negatively affected in patients living with arrhythmias and many patients experience a pronounced symptom burden. The arrhythmia can cause both uncertainty and limitations, including interference with work, reluctance to perform and plan for leisure activities and leading to self-imposed restrictions in daily life situations. There are patients striving to find strategies to manage the arrhythmia and for some this can become the focus in their lives. Treatment options are often a choice between pharmaceuticals and radiofrequency ablation (RFA) where RFA is an option for many arrhythmia-patients to be cured. In the care of arrhythmia-patients it is of great importance to combine objective examinations with patient-reported outcomes (PROs) to achieve patient’s own experiences of treatment efficacy and arrhythmias interference in daily life situations.

Aims: The overall aims of this thesis were to assess symptom burden and HRQOL in patients with arrhythmias and to develop and validate an arrhythmia-specific questionnaire, suitable for most arrhythmia-patients.

Design and Methods: Studies I and II were single-centre studies including patients referred for RFA, with two different arrhythmia diagnoses. Assessments of patient-reported outcomes (PROs) concerning HRQOL were performed using two questionnaires, SF-36 and EQ-5D (I-II). Further, patients were asked some disease-specific questions (I). Study I describes assessments before the RFA treatment and Study II the follow-up assessments at three and twelve months after RFA. Patients’ scoring of HRQOL was compared to age and gender matched reference groups before and after RFA (I-II). Studies III and IV describe the development and validation of a disease-specific questionnaire ASTA (Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia) assessing symptom burden and HRQOL. Studies III and IV were multicentre studies. Patients planned for DC-conversion, AF patients seeking emergency care and those with different forms of arrhythmias referred for RFA were included.

Results: Patients scored significantly lower HRQOL in seven of SF-36’s eight scales compared to the age and gender matched reference groups before RFA treatment. Frequent arrhythmia attacks had a great negative impact on HRQOL, and female gender and older age were factors contributing to worse HRQOL (I). Treatment with RFA restored the patients’ HRQOL. Most positive effects were seen at three months follow-up. One year after treatment patients and the matched reference group scored their HRQOL to a similar level, assessed with SF-36 and EQ-5D index (II). The validated ASTA questionnaire was found to have good psychometric properties. Construct validity was confirmed with sufficient levels of item-total correlations in the ASTA symptom burden scale and HRQOL scales. The dimensionality of the ASTA HRQOL scale was established with confirmatory factor analysis, supporting a physical and a mental subscale. The internal consistency, demonstrated with Cronbach’s alpha (α), was satisfactory for the ASTA symptom burden scale and the ASTA HRQOL scales, varying from α 0.79 to α 0.91 (III-IV).

Conclusions and clinical implications: The studies in this thesis confirmed how negatively affected the arrhythmia-patients can be with a pronounced symptom burden and impaired HRQOL. Treatment with RFA was demonstrated to restore the patients HRQOL to an equal level of that of the matched reference group. PROs are important to take into consideration in the care of arrhythmia-patients, to achieve the patients’ subjective experiences of their daily life situation.

To the best of our knowledge ASTA is the first arrhythmia-specific questionnaire assessing symptom burden and HRQOL, suitable for most arrhythmia forms. The newly validated ASTA questionnaire can be an important contribution to assessment of PROs in arrhythmia-patients.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press , 2011. , 114 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1279
Keyword [en]
Arrhythmias, Symptom burden, Health-Related Quality of Life, Patient-reported outcomes, Validation, Disease-specific questionnaire
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-71873ISBN: 978-91-7393-017-8 (print)OAI: oai:DiVA.org:liu-71873DiVA: diva2:454893
Public defence
2011-12-02, Berzeliussalen, Universitetssjukhuset, Campus US, Linköpings universitet, Linköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2011-11-08 Created: 2011-11-08 Last updated: 2013-09-03Bibliographically approved
List of papers
1. Wolff-Parkinson-White Syndrome and Atrioventricular Nodal Re-Entry Tachycardia in a Swedish Population: Consequences on Health-Related Quality of Life
Open this publication in new window or tab >>Wolff-Parkinson-White Syndrome and Atrioventricular Nodal Re-Entry Tachycardia in a Swedish Population: Consequences on Health-Related Quality of Life
2009 (English)In: Pacing and Clinical Electrophysiology, ISSN 0147-8389, Vol. 32, no 10, 1299-1306 p.Article in journal (Refereed) Published
Abstract [en]

Background: Living with paroxysmal supraventricular tachycardia affects a patient's whole life situation, but few studies have addressed health-related quality of life (HRQOL) aspects in these patients. The aim was therefore to describe HRQOL in patients with atrioventricular nodal re-entry tachycardia (AVNRT) or Wolff-Parkinson-White (WPW) syndrome, referred for radiofrequency ablation (RF-ablation), compared to age- and gender-matched Swedish reference groups.

Methods: HRQOL was assessed with SF-36 and EuroQol (EQ-5D and EQ-VAS) and the patients were asked disease-specific questions.

Results: The 97 patients with AVNRT [53 ± 16 years of age/65 women] and 79 patients with WPW [42 ± 15 years of age/26 women] exhibited significantly lower HRQOL scores in SF-36 in the same seven of the eight scales: Physical functioning (PF), role-physical (RP), social functioning (SF), role-emotional (RE), general health (GH), vitality (VT), and mental health (MH) while there was no difference in bodily pain (BP) compared to their respective age- and gender matched Swedish reference group. HRQOL scores were lower for patients with AVNRT compared to WPW in the areas of PF (P < 0.001), BP (P < 0.05), and GH (P < 0.01) in SF-36, and the same was found in EQ-VAS (64.8 vs. 71.2, P < 0.05). Occurrence of episodes of tachycardia more often than once a month compared to less frequently than once a month was associated with significantly lower HRQOL in all eight scales in SF-36 (GH, RE, MH: P < 0.01 and PF, RP, BP, VT, SF: P < 0.001) and EQ-5D index (P < 0.001) and EQ-VAS (P < 0.05) Arrhythmia duration longer than one hour compared to patients with shorter duration of the tachycardia-affected GH in SF-36 negatively (P < 0.05). Patients who experienced symptoms not only during activity but also at rest scored lower in SF-36 GH (P < 0.01) and SF (P < 0.05).

Conclusion: Measuring HRQOL in patients with WPW or AVNRT is an important way to evaluate and describe these patients' life situation. These conditions were found to have a pronounced negative impact on HRQOL. The frequency of arrhythmia occurrence is one important factor to consider when setting priorities for treatment with RF-ablation.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-52613 (URN)10.1111/j.1540-8159.2009.02476.x (DOI)
Available from: 2010-01-05 Created: 2010-01-05 Last updated: 2013-12-17
2. Impact of radiofrequency ablation on health-related quality of life in patients with paroxysmal supraventricular tachycardia compared with a norm population one year after treatment
Open this publication in new window or tab >>Impact of radiofrequency ablation on health-related quality of life in patients with paroxysmal supraventricular tachycardia compared with a norm population one year after treatment
2010 (English)In: Heart & Lung, ISSN 0147-9563, E-ISSN 1527-3288, Vol. 40, no 5, 405-411 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: This study evaluated the impact of radiofrequency ablation (RFA) on health-related quality of life (HRQOL) in patients with paroxysmal supraventricular tachycardia (PSVT).

METHODS: HRQOL was assessed with the Short Form-36 Health Survey (SF-36) and EuroQol (EQ)-5D at baseline and 3 and 12 months after RFA. At 12 months, the patients were compared with an age- and gender-matched reference group.

RESULTS: Patients showed a marked improvement in all the SF-36's scales at 3 months after treatment compared with baseline. Patients scored higher in all scales in the SF-36 but not in the EQ-5D's index at 12 months compared with baseline. No further improvements were detected from 3 to 12 months follow-up. Twelve months after treatment, patients scored equal to the reference group in the SF-36 and EQ-5D index, indicating a complete restoration of the HRQOL after RFA.

CONCLUSION: PSVT is a condition with a pronounced impact on HRQOL. At 12 months follow-up after RFA, patients' HRQOL scores were similar to those of the age- and gender-matched reference group.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-68629 (URN)10.1016/j.hrtlng.2010.09.004 (DOI)
Available from: 2011-05-24 Created: 2011-05-24 Last updated: 2017-12-11Bibliographically approved
3. Development and validation of a new Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia (ASTA) with focus on symptom burden
Open this publication in new window or tab >>Development and validation of a new Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia (ASTA) with focus on symptom burden
2012 (English)In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 10, no 44Article in journal (Refereed) Published
Abstract [en]

Background: Arrhythmias can appear with a variety of symptoms, all from vague to pronounced and handicapping symptoms. Therefore, patient-reported outcomes (PROs) concerning symptom burden are important to assess and take into consideration in the care and treatment of patients with arrhythmias. The main purpose was to develop and validate a disease-specific questionnaire evaluating symptom burden in patients with different forms of arrhythmias.

Methods: A literature review was conducted and arrhythmia patients were interviewed. Identified symptoms were evaluated by an expert panel consisting of cardiologists and nurses working daily with arrhythmia patients. SF-36 and Symptoms Checklist (SCL) were used in the validation of the new questionnaire Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia (ASTA). Homogeneity was evaluated with Spearman's correlations and Cronbach's alpha coefficient (alpha) was used to evaluate internal consistency. Construct validity was evaluated using item-total correlations and convergent and discriminant validity. For this, Spearman's correlations were calculated between the ASTA symptom scale, SCL and SF-36. Concurrent validity was validated by Spearman's correlations between the ASTA symptom scale and SCL.

Results: The correlations between the different items in the ASTA symptom scale showed generally sufficient homogeneity. Cronbach's alpha coefficient was found to be satisfactory (alpha = 0.80; lower bound 95 % CI for alpha = 0.76). Construct validity was supported by item-total correlations where all items in the symptom scale were sufficiently correlated ([greater than or equal to]0.3). Convergent and discriminant validity was supported by the higher correlations to the arrhythmia-specific SCL compared to the generic SF-36. Concurrent validity was evaluated and there were sufficiently, but not extremely strong correlations found between the ASTA symptom scale and SCL.

Conclusions: The nine items of the ASTA symptom scale were found to have good psychometric properties in patients with different forms of arrhythmias. Arrhythmia patients suffer from both frequent and disabling symptoms. The validated ASTA questionnaire can be an important contribution to PROs regarding symptom burden in arrhythmia patients.

Keyword
Arrhythmias, symptom burden, disease-specific questionnaire, questionnaire development, validation
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-71871 (URN)10.1186/1477-7525-10-44 (DOI)000308229600001 ()
Note

funding agencies|Carldavid Jonsson Foundation||Medical Research Council of Southeast Sweden (FORSS)||County Council of Ostergotland||Stina and Birger Johanssons Foundation||Siv Olssons Foundation||

Available from: 2011-11-08 Created: 2011-11-08 Last updated: 2017-12-08Bibliographically approved
4. Development and validation of an Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia (ASTA) with focus on Health-Related Quality of Life
Open this publication in new window or tab >>Development and validation of an Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia (ASTA) with focus on Health-Related Quality of Life
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Background: Health-Related Quality of Life (HRQOL) assesses patients’ subjective experiences of illness and treatment and provides valuable information for quality assurance of health care interventions. The purpose was to develop and validate a disease-specific questionnaire evaluating HRQOL in patients with different forms of arrhythmias.

Methods: The Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia (ASTA) HRQOL scale was developed from a literature review and patient interviews. An expert group of cardiologist, nurses and patients was involved in the development. For the validation data was also collected with SF-36. Construct validity was evaluated with item-total correlations and confirmatory factor analyses (CFA) suggesting a physical and mental subscale. Convergent and discriminant validity were evaluated using multitrait-multimethod (MTMM) with Spearman’s correlations. Internal consistency was evaluated using Cronbach´s alpha.

Results: Data on ASTA HRQOL scale and SF-36 were collected from 270 patients, 66% men with a mean age of 59 years (SD ± 12.9). All items reached the expected level of item-total correlations ≥0.30. The CFA demonstrated satisfactory high factor loadings, both for the total scale and the physical and mental subscales. After error variances were allowed to correlate a good fit was reached between model and data.

Convergent validity was confirmed with strongest correlations between ASTA’s physical subscale and SF-36’s physical component summary (PCS) and for ASTA’s mental subscale and SF-36 mental component summary (MCS). Discriminant validity was supported with lower correlations between  ASTA’s physical scale and SF-36 MCS and between ASTA’s mental scale and SF-36 PCS. Internal consistency and lower bound confidence intervals were >0.70 for all of the ASTA HRQOL scales.

Conclusions: The validated ASTA HRQOL scales were found to have good psychometric properties and can be a valuable contribution for HRQOL evaluations in patients with different forms of arrhythmias

Keyword
Arrhythmias, Health-Related Quality of Life, questionnaire development, validation
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-71872 (URN)
Available from: 2011-11-08 Created: 2011-11-08 Last updated: 2013-09-03Bibliographically approved

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