Function and disability status among women with fistula using WHODAS2.0: A descriptive study from Rwanda and Democratic Republic of Congo

To assess function and disability among women in Rwanda and Democratic Republic of Congo living with fistula and identify characteristics associated with higher disability scores.


| INTRODUC TI ON
As development efforts have achieved improvements in maternal mortality, healthcare providers and policy makers have increased their attention towards the significant, often silent, burden of maternal morbidities. 1,2 Estimates indicate that for every maternal death, 20-30 women face acute or chronic morbidity with lasting effects on health and function. 3 In 2012, WHO convened the Maternal Morbidity Working Group with the aim of standardizing measurement and building evidence to improve identification, prevention, and treatment of maternal health conditions and related disability.
They define maternal morbidity as "any health condition attributed to and/or complicating pregnancy and childbirth that has a negative impact on the woman's well-being and/or functioning". 4 The culmination of their efforts yielded a maternal morbidity framework and standardized assessment tool. 4  Identifying these factors and their relationships allows healthcare providers and researchers to understand differences in outcomes among individuals with the same health condition and can inform treatment planning and resource allocation. WHODAS 2.0 has been described for a variety of populations, including pregnant women and those with maternal health conditions of varying severity. 7,8 Pelvic fistula is among the most severe maternal morbidities. It is an atypical connection between the upper or lower genital tract and adjacent upper or lower urinary tract and/or lower gastrointestinal tract. 9 It results in the uncontrolled passage of urine and/or feces and often leads to severe physical, psychological, and economic consequences. In low-resource settings, fistula is often associated with childbirth, following prolonged, obstructed labor; iatrogenic cases due to operative or instrumental delivery are also cited. 9 Prevalence estimates indicate 1.57/1000 women of reproductive age in sub-Saharan Africa and South Asia experience this condition. 10 Associated conditions include: bladder stones, kidney infection or dysfunction, fibrosis/stenosis, dyspareunia, pelvic inflammatory disease, amenorrhea, infertility, urea dermatitis, nerve damage, joint contractures, pain, and malnutrition. 11 Psychosocial consequences include depression, anxiety, social isolation, abandonment, and loss of employment, income, and/or livelihood. 12 Surgery is the primary treatment for most fistulae. However, multi-year delays in care are frequently cited as a result of resource limitations (i.e. lack of trained healthcare providers, equipment, and supplies) and financial barriers, including the cost of surgery and ancillary care. 12 Postoperative health conditions often persist, including incontinence, pelvic and musculoskeletal pain, sexual dysfunction, weakness, and negative impacts on mental health. [13][14][15][16] WHO Disability Assessment Schedule 2.0 has not been described for this population with fistula. No known studies have quantified the level of disability for this population despite the welldocumented negative impact of fistula on physical health, economic status, and psychosocial well-being. 17 The objectives of this study are: (1) to assess function and disability among women in Rwanda and Democratic Republic of Congo (DRC) living with fistula and (2) to identify characteristics associated with higher disability scores. This will provide insight into the disability experienced by women with fistula and will inform future clinical program planning, research, and health policy initiatives.

| MATERIAL S AND ME THODS
Women with fistula presenting for medico-surgical care were re- cognition, mobility, self-care, getting along, life activities, and participation. 5 Surveys may be self-, interviewer-, or proxy-administered.
Respondents rate level of difficulty performing tasks related to these domains on a five-point Likert scale (from 0 to 4) from "none" to "extreme or cannot do." Both 12-and 36-item surveys are available. The 12-item version (0-48 points) includes two questions related to each domain and explains 81% of the variance in scores on the 36-item version. 5 Population-level data suggests that 12-item scores of 10-48 points represent the top 10% of the population distribution, and are probably indicative of clinically significant disability. 19 Although there is no consensus, proposed cut-points based on 12-item scores are: 0 points, no disability; 1-9 out of 48 points, low disability; and 10-48 out of 48 points, high disability. 19 We used the 36-item interviewer-administered questionnaire, and computed disability scores for both 12-and 36-item versions to enable comparison. Scoring methods include a simple sum score and a complex, weighted score based on item-response theory. 5 The complex scoring method yields scores ranging 0 to 100; where 0 is no disability and 100 is complete disability. WHODAS 2.0 has been validated in a variety of populations, including in the context of reproductive health, and has good psychometrical properties. 5 Data were analyzed using Stata 15 (StataCorp LLC., College Station, TX, USA). Demographic data were summarized using frequency distributions, medians, and interquartile ranges (IQR). Fisher exact test (for categorical variables) and Kruskal-Wallis test (for continuous variables) were used to test strength of association between fistula type and disability scores.

| RE SULTS
Of the 77 women who presented for care and completed WHODAS 2.0, 47 (61%) were from Rwanda and 30 (39%) from DRC. Seven participants presented with incontinence but on examination were found not to have fistula and were excluded from further analysis.
An additional participant was excluded for a missing diagnosis, leaving 69 participants for analysis. Table 1 presents participant demographic information. The most common fistula type was VVF (n = 41, 59.4%), followed by UVF (n = 10, 14.5%) and RVF (n = 10, 14.5%), then TAPU (n = 8, 11.6%). There were no significant differences in with highest disability among women with TAPU and lowest among women with RVF. When grouped according to degree of disability, 19 most women with fistula experienced high disability (83%). The remainder reported low (12%) or no disability (4.5%). There were significant differences based on fistula type (P = 0.000); women with RVF had lower disability scores than women with other fistula types ( Table 2). with TAPU and lowest among women with RVF. When considering the impact of fistula on disability scores by domain, the highest scores for all groups included participation in society and life activities. There were significant differences between fistula type in all domains, except participation in society. Women with RVF had the lowest scores and those with TAPU had the highest scores (Table 3).

| DISCUSS ION
Women with fistula in Rwanda and DRC experience a high level of disability. In our study, women with RVF scored significantly lower In comparison to WHODAS 2.0 scores from other studies, the severity of disability reported by women with fistula is greater than that reported by a cohort of Brazilian women with severe maternal morbidity 20 and in another group of premenopausal women with urinary incontinence. 21 Regional WHODAS 2.0 data are limited.
One study from Uganda describes 12-item scores for individuals with physical disabilities affiliated with a community-based rehabilitation program; the reported mean was 12.68 points (26.4/100) with 47% categorized as low disability and 53% as high disability. 22 Another report from South Africa used the 36-item questionnaire to ascertain domain-specific disability in community-dwelling stroke survivors, indicating severe to complete disability in mobility, selfcare, life activities, and participation in society. 23 Although women with fistula represent a different population from those described in these studies, comparable or higher scores in our study suggest that women with fistula experience a significant burden of disability akin to levels experienced by those with conditions that may result in overt, physical disabilities requiring rehabilitation services.
Malembaka et al. 24  Values are given as median score; maximum score =100, and indicates maximum disability across domains.
case management, and home visits, whereas those in cluster 2 may gain from self-management solutions, such as health coaching and education, in addition to primary prevention and treatment of acute and chronic health conditions.
To date, the majority of resources for fistula programs have been allocated to surgical care, whether to finance international missions or to support local skills training efforts. Although surgical capacity is much needed, a narrowly focused biomedical approach does not account for the multidimensional aspects of health and function of women with fistula and its associated morbidities. Malembaka et al. 24 cite the problem of "donors-dictated disease-based indicators" in low-and middle-income countries, which often undermine efforts to strengthen health systems through multidisciplinary, comprehensive approaches to healthcare delivery. 24  Our study has several limitations. First, this was a small sample of women seeking care at two regional hospitals and may not represent all women with fistula. Second, WHODAS 2.0 scores were captured at a single time-point, pre-operatively. Though this was the goal of the study, post-operative measures may be captured at or beyond the 30-day mark to ascertain the functional impact of surgery, as well as any related co-morbidities that may persist.
Third, WHODAS 2.0 has not been previously validated in the native languages spoken in Rwanda and DRC or in a population with fistula. Although the survey provides a measure of global function, it may not capture important, condition-specific information. Lastly, available patient data were limited in this study. We were unable to examine associations between disability scores and certain patient characteristics, such as parity or length of time living with fistula, which may be important factors in understanding disability status in this population.
To conclude, disability was common in this study population.