IDENTIFIED GAPS AND SUGGESTED PROGRAMME IMPROVEMENTS ��������������������������������������������������������������������������

LIMITATIONS

DISCUSSION

•Personality disorders are under diagnosed in this study according to the project psychiatrist, and based on reports in patients’ files where personality disorders are only ‘queried’� Treatment for this problem is not possible within the programme, and more information on a patient’s history would be needed to make this diagnosis� • Patients are either treated as part of the MSF cohort or the Global

Fund (GF) cohort� Both cohorts receive the psycho-social intervention, but only patients in the MSF cohort have their TB treatment within the programme� This means for patients treated for TB that is paid for under Global Fund (33 or 56%) - some baseline medical characteristics are not available in the data base� This includes variables such as whether the patient experiences adverse events from treatment, whether the patient smokes, the x-ray cavity profile. • Patients responses on the PHQ9,

GAD7, AUDIT and ASSIST questionnaires may not always accurately represent the patients actual state of mental health, and in some cases patients were included into the cohort despite normal scores,

as it was suspected by a psychiatrist, social worker, nurse, doctor or counsellor-educator that the patient was struggling with alcohol� Honesty in these forms might increase as time in the programme increases, as the counsellor-educators and other health care workers’ relationship with the patient improves� This may partially explain why some scores go up over the course of the programme, but it may also be because patients leave the IPD at around 4- 6 months so have more access to alcohol after their baseline assessment, which is done in IPD� • Half (3) of all women offered the opportunity to take part in the indepth interviews refused to take part in an interview, whereas only 1 man refused to take part in interviews� This is thought to be because the subject matter of the interview, and especially drinking, is more stigmatised for women�

Furthermore, the women who did agree to participate, did not talk openly about harmful or high levels of alcohol use, and in general seemed to give formal and socially acceptable answers, in comparison to the information available through the patient’s files. A small number of the men also seemed to share a more formal and socially acceptable description of their current lives than would be indicated by the information in their files. • It was not possible to do in-depth interview patients who were voluntarily LTFU from the programme, or with patients who are recorded as having an alcohol and other substance abuse disorder, so, there is some response bias present in interviews as patients who were not adherent to the programme were under-represented� Though we were able to speak to 7 patients with high risk of adherence issues, and 3 who had adherence below 90%, also with one patient who was taken off treatment around the time of interview due to very poor adherence, and recorded at LTFU� Counsellors recommended against inviting the two patients with alcohol and other drug problems who were eligible for interview due to the risk they would not accept, and one is now

LTFU� We did try to invite another patient voluntarily LTFU, with whom it was thought it might be possible he would agree to interview, but he could not be contacted�

OVERALL ADHERENCE TO TB TREATMENT

Adherence to MDR/RR-TB treatment for patients enrolled in the person-centred multidisciplinary psychosocial support and harm reduction intervention is high at 95%� This initial result, whilst not yet final, is encouraging, given the complex issues faced by the patients included in the programme, and given forced hospitalisation was not required for the majority (~only around 12%) to achieve this favourable result� Thus far, this study showed that there is little variation in adherence in most patient sub groups - which may be an early indication that the person-centred approach is really tailored to all individuals, though this it may simply be to low power, so would need confirmation when more data is available� There was however some indication that patients who are in union, who have current abuse of substances other than alcohol, who have hepatitis B or C and who have not previously been on TB treatment, and those that are employed might have more challenges with adherence than other patients�

Whilst it was not possible to formally compare the adherence in this cohort, we have collected information on adherence for other MDR/RR TB patients in Minsk� Median overall adherence for the 59 patients with a disorder due to the use of alcohol in the study

is 95% (IQR: 81- 98) compared to 90% (IQR: 84-99%) for 31 patients (Wilcoxon rank sum test, p-value = 0�9381) not in the programme, but who attend the same facilities, who have completed MDR/RR-TB treatment� The level of adherence for non-MSF MDR/RR-TB patients in the IPD who also had reported alcohol or substance use disorders but were not part of the MSF cohort due to their place of abode was exactly the same at 100%� This might indicate that this approach has a positive impact on adherence only in an out-patient setting – as adherence in IPD is always good, but has substantial limitations in terms of reducing the quality of life for patients kept in hospital�

TB TREATMENT OUTCOMES

MDR/RR-TB treatment completion for patients starting treatment in 2018 in Belarus is 74%, and globally it was 57% (World TB report 1), indicating that the level of care for MDR/RR-TB in Belarus is generally higher than in other parts of the world. We do not have final treatment outcomes for patients in this study, but the Kaplan-meier analysis indicates that 76% are in care at six months and 63% are still on course for a positive outcome at 18 months which is therefore looking like it will be lower than the 70% average in Belarus� This possibly reflects the fact that MDR/ RR-TB patients in this cohort are the patients with most challenges to adhering to treatment, and some of these have simply not reached a place where they have the will and determination to stop or reduce their alcohol or substance abuse and to complete their TB treatment� It could also be an indication that, for some patient groups, the approach is not fully adapted to their needs in order to support them to complete treatment�

PREVALENCE OF ALCOHOL DISORDER AND OTHER VULNERABILITIES

Using data from patients currently in IPD, we estimate that 40% of patients with MDR/RR-TB have a disorder due to the use of alcohol in Minsk, which is in line with previous estimates� A minority of patients in our cohort did not openly admit to having high or problematic alcohol consumption, and were only diagnosed as such based-on suspicions from health workers, which in some cases meant having smelt or seen alcohol on the patient� During interviews, none of the women would talk openly about alcohol or drug abuse, and a minority of men would not open up about it either, reflecting the high level of stigma of being dependent on alcohol especially in the case of women� Health workers reported that despite the stigma associated with alcohol dependence, high levels of drinking are very socially acceptable, and that not drinking is itself sometimes stigmatised in Belarus� Furthermore, there is a lack of government policies to curb the quantity of drinking, and alcohol is very cheap and easily available� For some patients in the cohort, alcohol has at times been a major strategy to cope with stress�

All participants are affected by other vulnerabilities such as unemployment, a past history of incarceration and many also had co-morbidities such as Hepatitis C, HIV, diabetes, heart disease or other mental health problems� Some of the patients are homeless and others have a lack of social and economic support� For those that did have close family members, some had interpersonal issues at home� For those in union, the quantitative analysis indicates they have worse adherence than those that are single� This may in some cases be linked to sharing and maintaining their alcohol disorder with their partner, but it may also be down to more complex issues of interpersonal distress�

IMPORTANCE OF CLOSE PERSONAL RELATIONSHIPS

In the qualitative component, patients, described that their relationships with their family and in particular with their partners were very important motivations for them to either keep going with their TB treatment, or to reduce their alcohol consumption� For some patients, particularly who were forced into hospitalisation, close personal bonds were noticeably absent� This is somewhat in contrast to the quantitative data where, those in union had on average worse adherence than those who were single� This could be explained by findings in other studies that describe how marital distress and problematic drinking can often exacerbate each other in a cyclical fashion (Rodriguez, Neighbors and Knee, 2014)� Information collected through in-depth interviews and focus groups goes some way to explaining this relationship� Some patients described how shame of their alcohol problem or of TB in front of their loved ones was a large motivation for them to keep going with treatment, or stop drinking� It might be this feeling of shame that drives them further into a cycle of drinking or of not taking their pills� There is some evidence in the literature that alcohol and other substance disorders have often been linked to personal relationship distress, particularly during childhood, and associations have been described in both directions i�e� that personal relationship distress can increase the risk of alcohol dependence and alcohol dependence can increase the risk of personal relationship distress (Konkoly Thege et al�, 2017; Fairbairn et al�, 2018)� Some patients described that they had been treated by practitioners in a way that perhaps echoed the poor treatment they had seen elsewhere, for example having their confidentiality betrayed or being treated as less than human� On the plus side, patients and practitioners described that, having a counsellor to help them with challenges in their close personal relationship was a key part of the person-centred care that they receive that was helpful to them� MOH staff also described that for some patients, the programme would be one of the few times in their life that they had someone to help them with their problems, and for some the first time they were treated as a human being� Unfortunately, there was some ambiguity expressed by MOH practitioners on the benefits of this humane person-centred approach, as it was feared in some cases it would lead to allowing the patient to do as they please, and therefore increasing the chances that they leave the programme�

GAPS IN TREATMENT APPROACHES

Responses from patients in interviews indicated that in some cases the times between screening, diagnosis and treatment start was surprisingly long� Furthermore, several patients indicated that they probably caught TB from a drinking buddy – but that they had not been traced as a contact of that drinking buddy� Enhanced follow up of TB positive patients’ drinking buddies could therefore be recommended�

Furthermore, quite a high proportion of patients have comorbidities, especially HIV, Hepatitis C or heart disease, and some patients complained that they were not treated as a whole human being by doctors but, as one put it, as “a piece of some incomprehensible flesh” [IDI6]. The programme could therefore perhaps be improved by extending the multi-disciplinary approach to be integrated with other medical specialities such as HIV or heart disease� Further assessment would be needed to assess what this would look like, and how it would need to be approached�

DIFFICULTY IN ASSURING PLANNED FOLLOW UP SESSIONS

Considering the MSF intervention protocols, patients at high or moderate risk of adherence problems did not on average have the total number of scheduled counselling of contact sessions with MSF counsellors� The programme guidelines states that for high-risk patients this should be 1 counselling session per week and 2 further short contacts, whereas for moderate risk patients this should be 1 counselling and one further contact sessions per week� In reality patients tended to have 2 or three sessions in total per month� Patients who had more overall contacts, did in general have worse adherence than those with good adherence, in fact number of mental health sessions was the only variable significantly associated with non-adherence in the univariate analysis� This is likely explained by the fact that those with higher risk of adherence issues have more sessions scheduled� Lack of attendance was usually linked to a patient not answering the phone, or not turning up for counselling, which is particularly common if and when patients are in binge drinking phases�

METHOD AND LOCATION OF DOTS

This study did show that adherence to treatment was better whilst in IPD than for OPD treatment� Furthermore, adherence tended to dip to its lowest at around 4-9 months, the time when patients first leave the IPD for OPD care. However, many patients described the psychological difficulties of being locked up for a year or more� This is in line with global literature, where it is well documented that forced hospitalisation can lead to good TB outcomes, but it is also shown to lead to psychosocial problems such as loneliness caused by not being able to see a long-term partner, or issues linked to not being able to go about the usual social and economic activities (Oladimeji et al�, 2016)� This study in Nigeria also showed that women, and patients who were previously employed tended to have more psycho-social concerns during hospitalisation� The impact of a lengthy MDR/RR-TB treatment can be worse on those with limited social and financial support networks due to the loss of income and social life that happens when in hospital� Forced hospitalisation is in particular difficult for married women – potentially due to being taken away from their children� In-patient treatment for MDR/RR-TB that is characterised by isolation and where the services focuses predominantly on provision of drugs has been described to worsen feelings of depression and despair, furthermore patients who have co-morbidities are more likely to be depressed� Indeed, the article which describe the negative effect of forced hospitalisation is entitled “Death is a better option than being treated like this” (Huque et al�, 2020)� The findings of this study therefore suggest that forced hospitalisation rates in Belarus should be further reduced in favour of other options, especially since that the WHO recommends ambulatory care where possible (WHO, 2019)�

Video DOT or home-based DOT, as opposed to facility-based outpatient DOT was preferable for many patients�, as it gave them freedom to have their own lives, without being forced to come to the facility each day� But, the option of video DOT isn’t preferable for all patients – one patient preferred to come to the facility every day to meet her lover that she met whilst on treatment� The social support element is undoubtedly important, but could perhaps be provided in other ways such as with increased group counselling or health education� Regarding video or home-based DOT, one patient who admitted to treatment gaps, particularly when drinking, did notably say when asked if he would be more likely to take his pills if he took home 2 weeks of pills at once� The patient stated he would still not take his treatment during a binge drinking phase – but video DOT might, with the right phone or home based follow up, reduce the treatment gap after the end of a binge drinking phase�

DIAGNOSIS OF PSYCHIATRIC DISORDERS

Personality disorder, according to the project psychiatrist, is under-diagnosed in some patients, and in particular amongst patients who abuse substances other than alcohol, who have an average adherence of only 68%� Those with a diagnosed personality disorder in the cohort had an average adherence of 97%, this is thought to be because for the most part these patients have been having treatment for their personality disorder, and/or they are in forced treatment so have good adherence� Around 20% of FHC patients are estimated to have a personality disorder according to the project psychiatrist� Whilst we cannot show this from the results, due to not having concrete information on the diagnosis, we hypothesis that it is untreated personality disorders that leads to poorer outcomes in particular with patients that abuse other drugs� The co-occurrence of personality disorders, especially borderline personality disorder and anti-social personality disorder, and alcohol disorders are well described

in the literature (Sher and Trull, 2002; Trull et al�, 2018)� Avoidant and paranoid personality disorders are also thought to co-occur frequently (Sher and Trull, 2002)� Patients with both disorders have also been shown to have worse outcomes, than patients with only alcohol disorder� Crucially, impairment of decision making is a behaviour that tends to underlie both alcohol dependence and borderline personality disorder (DOM et al�, 2006)� Furthermore, it is generally advisable for patients with both a personality disorder and a substance abuse disorder to focus on the substance disorder as a priority (Links et al�, 1995)� But, those with borderline personality disorder in one study were found to be more likely to also incur treatment centre initiated drop out, due perhaps to being difficult to manage for the staff (Tull and Gratz, 2012)�

The psychiatrist in the project says that diagnosis is not currently possible as diagnosis requires very specific anamnestic data, including childhood behaviour, part of which should be collected from family members rather than the person themselves� Furthermore, another reason for under-diagnosis, is the feeling that official diagnosis will not always help a patient as much as it could do� For example, a patient who was an opioid addict described how ‘I stopped only when I myself came to it. Not because of being registered [as an addict].’ [IDI3] There are also considerable down sides described to being officially registered as having a psychiatric disorder, for example for alcohol or substance abuse you have to regularly go to the dispensary to give samples, and you are not allowed a driving licence, certain jobs are no longer possible (e�g� working at heights) and there can be some restrictions in parenting responsibilities including a ban on adoption or guardianship� Furthermore, employers may act in a way that is discriminatory against people with a psychiatric diagnosis� A diagnosis of personality disorder would have consequences for the person that depend on the severity of the disorder� If the person is frequently out of control or exhibits socially dangerous behaviour, etc�, then the commission sets “stricter” follow up and restrictions: meaning a person cannot drive a car, carry out some types of work, use weapons, carry out military service� If the personality disorder is under control, then the restrictions will be set on an individual basis�

Treatment of personality disorders, would also be fairly resource intensive – requiring the provision of reward and incentives for patients with personality disorders who have good adherence and compliance to other aspects of treatment� The provision of incentives for patients with personality disorders might also affect other patients’ motivation, so this might potentially need to be provided more broadly for the sake of equality� Furthermore, intensive psychotherapy or behavioural work for personality disorder would be needed, which requires specialised skills that are not currently available at the required level in the programme�

STAFFING LEVELS

First, the high turnover of MSF staff was problematic for their MOH counterparts� Furthermore, staff working in the programme and in MOH indicated that in some areas, the programme is overstaffed� This is particularly noticeable in that there are too few patients per counsellor, but steps are being taken to take on more patients� Then in terms of distribution of staff, it seemed there was too high a rate of change for patients – they might start with one counsellor as an in-patient, then see another when they start in out-patient, and another if sent for forced hospitalisation, which seemed problematic for patients who struggled to trust clinicians� Given that patients have both MSF and MOH consultants, this could be another source of high changeover of staff from the patient perspective� The system of allocating patients to counsellors could therefore improve� MOH doctors on the other hand, seemed overstretched when treating patients, whilst MSF doctors did not have responsibility over patients so did not have to complete some of the tasks associated with this� In some ways this was positive as it gave MSF doctors time to spend with each patient to provide a high level of personalised care, but at the same time caused issues as another doctor would be the one taking the treatment decision� It would be a lengthy process to change the system whereby MSF doctors could take legal responsibility of patients, but could be worth considering going forwards� Staff in the project estimate that a counsellor or a social worker could cover around 20 patients each� Though if many of the patients were high risk and complex, or if patients are divided between many different facilities then this number would need to be lower, in order to account for increased time spent with each patient or increased time travelling between facilities� One psychiatrist could manage around 20 patients who need psychiatric intervention, though again the psychiatrist’s work would depend on the level of intensity of work needed with each patient, so this figure could change if more intensive treatment were taken on� The programme can then be run with nurses and doctors in ratios that are standard to the country�

PSYCHOLOGICAL TESTS

Whilst this study utilises information from systematic psychological tests such as the GAD7, PHQ9, ASSIST and AUDIT, the quality of data arising from these tests was not as strong as other data collected as part of this programme� Counsellor-educators described that baseline patients were not always open to filling their forms in a way that honestly and accurately represents their psychological state, and for many patients the form was not filled out at the scheduled 6 and 12 month follow up sessions, so follow up data is missing� The fact that the AUDIT and ASSIST scores’ median seem to worsen at 6 months may indicate that patients feel more comfortable with sharing accurate information as they gain trust in the program rather than actual deterioration� Some counsellor-educators, concluded that ‘If you just technically follow some guidelines, I believe the efficacy [of the intervention] will be pretty low� … If you add an emotional and personal component, and … if you dedicate your

time, then it works�’ This feeling might indicate that counsellors felt perhaps the complexities of the psychological state of these patients is not accurately captured in the standardised forms to measure alcohol use, depression and anxiety� Which may have led to its underuse, in combination with not wanting to antagonise the patients by making them fill out cumbersome forms, in favour of a more personalised approach� Whilst this attitude is commendable, it would be beneficial for the monitoring of the programme if the forms could be filled regularly, and if counsellors could encourage patients to fill it accurately.

ACCEPTABILITY OF THE PROGRAMME

The qualitative component describes how the experience of vulnerability, despair and marginalisation or prejudice can negatively impact a patient’s experience of MDR/RR-TB and gives insights into the use of alcohol or other substances� Conversely, patients and practitioners described a self-determination that, when matched with holistic and person-centred guidance from the practitioner team, seems to be what leads to patients in the programme achieving better acceptance and therefore outcomes� We have taken the definition of acceptability to be ‘a multi-faceted construct that reflects the extent to which people delivering or receiving a healthcare intervention consider it to be appropriate, based on anticipated or experienced cognitive and emotional responses to the intervention�’(Sekhon, Cartwright and Francis, 2018)� Meaning, in this instance, that project acceptability for the majority of patients and practitioners is contingent on the person-centred approach realising the potential of the individual, which is then enhanced with provision of a trusted support network to help navigate their treatment and challenges they face in their everyday lives� The support network would include those described as close loved ones by the patient and the more formal therapeutic interventions carried out by practitioners� Within the practitioner group good, effective guidance between health professionals was reported to optimise acceptance of the programme and lead to better outcomes for most patients� Overall therefore, the programme is acceptable for most patients in most circumstances� However, for some patients the programme could become more acceptable, notably for patients who use drugs other than alcohol, who have fractured or non-existent social support network, or who have a significant history of criminal behaviour which could potentially be indicators of undiagnosed and untreated personality disorder�

SUGGESTIONS FOR IMPROVEMENTS TO THE PROGRAMME

POLICY

•Uptake and scale up of the programme across Belarus and in countries with similar patients who exhibit disorders due to the use of alcohol and who are likely to be at risk of not completing MDR/RR-TB treatment • Carry out an assessment to look into whether rolling out the programme to patients with drug sensitive (DS) TB, and suspected alcohol or substance use disorder would be worthwhile� Also consider which elements of the person-centred approach can be incorporated into DS-TB care� • Assess whether the multi-discipli-

nary approach could be integrated

with other diseases such as HIV,

Hepatitis C and Heart disease given the high proportion of patients with co-morbidities and the struggles patients faced in doctors be-

ing disinterested in medical concerns other than TB • Creation of guidelines for the man-

agement of psychiatric disorders for TB patients

•Ensure patients are better involved

in the clinical decision-making pro-

cess. This could include improved discussions with patients about clinical issues in appointments, including helping them better understand the different professionals that are part of the multi-disciplinary approach� Furthermore, it could mean inclusion of patients (either expert patients or the patient in question) into the Consilium decision making process to ensure treatment decisions fully consider the patient’s point of view�

PRACTICE

•Increase in group and family interventions within the programme, as

for the moment, only a small proportion of patients currently benefit from this� Family interventions can help reduce stress and stigma for the patients� Patients have previously expressed a lack of interest in group sessions, so staff could try to support the instigation of a patient lead or peer-to-peer support group� • Patients reported learning from the experience of others around them, and practitioners suggested that for patients who refused to listen to health advice benefit from inter-

ventions with a group of practitioners at the same time.

•Adaptation of the programme for patients with suspected or con-

firmed personality disorders.

Patients could be screened for personality disorder at entry into the programme, and then patients could receive an enhanced care