Palliative long-term abdominal drains versus repeated drainage in individuals with untreatable ascites due to advanced cirrhosis: study protocol for a feasibility randomised controlled trial.

BACKGROUND: UK deaths due to chronic liver diseases such as cirrhosis have quadrupled over the last 40 years, making this condition now the third most common cause of premature death. Most patients with advanced cirrhosis (end-stage liver disease [ESLD]) develop ascites. This is often managed with diuretics, but if refractory, then the fluid is drained from the peritoneal cavity every 10-14 days by large volume paracentesis (LVP), a procedure requiring hospital admissions. As the life expectancy of patients with ESLD and refractory ascites (if ineligible for liver transplantation) is on average ≤ 6 months, frequent hospital visits are inappropriate from a palliative perspective. One alternative is long-term abdominal drains (LTADs), used successfully in patients whose ascites is due to malignancy. Although inserted in hospital, these drains allow ascites management outside of a hospital setting. LTADs have not been formally evaluated in patients with refractory ascites due to ESLD. METHODS/DESIGN: Due to uncertainty about appropriate outcome measures and whether patients with ESLD would wish or be able to participate in a study, a feasibility randomised controlled trial (RCT) was designed. Patients were consulted on trial design. We plan to recruit 48 patients with refractory ascites and randomise them (1:1) to either (1) LTAD or (2) current standard of care (LVP) for 12 weeks. Outcomes of interest include acceptability of the LTAD to patients, carers and healthcare professionals as well as recruitment and retention rates. The Integrated Palliative care Outcome Scale, the Short Form Liver Disease Quality of Life questionnaire, the EuroQol 5 dimensions instrument and carer-reported (Zarit Burden Interview) outcomes will also be assessed. Preliminary data on cost-effectiveness will be collected, and patients and healthcare professionals will be interviewed about their experience of the trial with a view to identifying barriers to recruitment. DISCUSSION: LTADs could potentially improve end-of-life care in patients with refractory ascites due to ESLD by improving symptom control, reducing hospital visits and enabling some self-management. Our trial is designed to see if such patients can be recruited, as well as to inform the design of a subsequent definitive trial. TRIAL REGISTRATION: ISRCTN, ISRCTN30697116 . Registered on 7 October 2015.

Barriers to timely diagnosis and treatment for children with hearing impairment in a southern Indian city: a qualitative study of parents and clinic staff.

OBJECTIVE: In low income countries, deaf children are identified late due to the absence of a universal screening. Hearing impairment is a common yet neglected disability in India that leads to loss of speech and language. This qualitative study explored barriers to accessing appropriate hearing services in one city in southern India. DESIGN: To identify the barriers in timely management of deafness, 25 semi-structured interviews were conducted. Data were examined using Applied Thematic Analysis. STUDY SAMPLE: Seventeen mothers of deaf children, primarily from low socioeconomic backgrounds, and eight staff members at a charitable hearing centre in Hyderabad. RESULTS: Barriers to accessing hearing services included failure to recognise deafness, the dominant role of elders in household decisions, belief that deafness would resolve, reassurance from a child's overall good health, lack of funds and transportation barriers to reach the centre particularly from rural areas. Parents frequently learned about services through word of mouth. CONCLUSIONS: The challenges to accessing appropriate services for deafness operate prior to presentation and include educational, cultural, navigational and financial barriers especially for those of lower socioeconomic status and residents of rural areas. The findings highlighted the need to raise awareness and implement wider screening programmes for early interventions.

Using Qualitative Methods to Explore Lay Explanatory Models, Health-Seeking Behaviours and Self-Care Practices of Podoconiosis Patients in North-West Ethiopia.

BACKGROUND: Podoconiosis (endemic non-filarial elephantiasis) is a chronic, non-infectious disease resulting from exposure of bare feet to red-clay soil in tropical highlands. This study examined lay beliefs about three under-researched aspects of podoconiosis patients' care: explanatory models, health-seeking behaviours and self-care. METHODS: In-depth interviews and focus group discussions were undertaken with 34 participants (19 male, 15 female) between April-May 2015 at podoconiosis treatment centres across East and West Gojjam regions in north-west Ethiopia. RESULTS: Explanatory models for podoconiosis included contamination from blood, magic, soil or affected individuals. Belief in heredity or divine punishment often delayed clinic attendance. All participants had tried holy water treatment and some, holy soil. Herbal treatments were considered ineffectual, costly and appeared to promote fluid escape. Motivators for clinic attendance were failure of traditional treatments and severe or disabling symptoms. Patients did not report self-treatment with antibiotics. Self-care was hindered by water being unavailable or expensive and patient fatigue. CONCLUSION: A pluralistic approach to podoconiosis self-treatment was discovered. Holy water is widely valued, though some patients prefer holy soil. Priests and traditional healers could help promote self-care and "signpost" patients to clinics. Change in behaviour and improving water access is key to self-care.

Barriers to access and re-attendance for treatment of podoconiosis: a qualitative study in northern Ethiopia.

BACKGROUND: Podoconiosis is a chronic non-infectious lymphoedema affecting individuals exposed to red clay soil in endemic areas. Evidence from International Orthodox Christian Charities (IOCC) treatment centers' registers suggests that a significant proportion of registered patients with podoconiosis fail to re-attend for treatment, putting them at risk of worsening disability associated with the lymphoedema and attacks of acute adenolymphangitis. The aim of this study was to explore barriers to access and re-attendance of patients with podoconiosis in northern Ethiopia. METHODS: A cross-sectional qualitative study was conducted at three IOCC treatment sites from February to April 2013. Twenty-eight patients and three project leaders took part in in-depth interviews. Three focus group discussions were undertaken with 22 patients, patient association leaders and project staff members. RESULTS: Barriers to access and to continued attendance at treatment centers were recognized by all participant groups. The following reasons were reported: lay beliefs about the disease's causation and presentation, occupational, geographic and financial barriers, stigma and conflicting expectations of treatment services. CONCLUSIONS: This study illustrates the multiple, step-wise barriers to accessing treatment faced by podoconiosis patients. These factors are dynamic, frequently interact and result from competing social and economic priorities.