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The Schizophrenia Coping Oral Health Profile. Development and Feasibility

Abstract Background The aim of this work was to present the creation of appropriate tools to evaluate the coping strategies in Oral-Health-related Quality of Life (OHrQOL) implemented by persons with schizophrenia (PWS), the Schizophrenia Coping Oral Health Profile (SCOOHP), and the results of a feasibility study. Methods A qualitative investigation was conducted between June 2016 and May 2017. The first step included 26 semi-structured individual interviews, 20 with PWS and 6 with health professionals (HPs), and 2 focus groups (PWS and HPs) to explore the experiences of the participants and how they felt about coping strategies in OHrQOL. The second step was a feasibility study involving a statistical analysis to test the acceptability and internal consistency (Cronbach’s α) of the SCOOHP. Results The analysis of these interviews allowed for us to obtain 277 items from 3545 verbatim transcriptions related to various dimensions of OHrQOL. We presented the items selected in coping concepts in this study. After selecting items in several stages, we drew up the SCOOHP scale with 23 items (15 items for positive coping and 8 items for negative coping). The feasibility study showed good acceptability, good understanding of the items and good consistency reliability (α = 0.59). Conclusions This is the first study that has enabled us to draw up a specific tool to assess coping strategies in OHrQOL of PWS. A multicentre study involving a larger sample of PWS is underway in order to perform the psychometric validation of the SCOOHP. Trial registration Clinical Trials Gov NCT02730832. Date registered: 21 March 2016.


Introduction
Schizophrenia is a serious and a complex mental illness that affects 1% of the population [1]. It is characterized by the presence of positive or negative symptoms. Positive symptoms are characterized by mental dissociation, delusion (false unshakable belief based on illogical grounds), hallucinations (false perception without a stimulus), dampened or inappropriate emotions, and episodic or continuous progression [2].
Schizophrenia is a chronic disease that requires long-term medical treatment, which can result in physical, psychological, and social problems related to both the disease and the potential side effects of treatment [3]. Previous studies have shown that persons with schizophrenia (PWS) neglect their self-care and have high rates of physical ill-health, such as heart disease or oral health, and a high mortality rate (life expectancy is reduced by 20%) [4,5]. One of the most visible elements of poor oral health in PWS is edentulousness and a large number of missing or decayed teeth [6]. A combination of dental caries, periodontal or infectious diseases and metabolic disturbances induced by antipsychotic treatments (including diabetes, obesity, and xerostomia), poor diet and lifestyle behaviours (diet rich in sugars, use of psychoactive substances such as tobacco, and inadequate oral hygiene) lead to poor health [7,8]. Difficult relationships with professional caregivers (such as fear of mental illness and lack of training) and the health system in general (including difficulties in gaining access to private practice, environment, and cost) are additional obstacles contributing to deficient somatic care [9]. Currently, oral health prevention and promotion programmes, based on knowledge in the general population and transposed for persons with severe mental disorders, have not proven to be very effective. The specific profile of persons suffering from schizophrenia must be taken into account [10].
The neglect of self-care by PWS appears to be influenced predominantly by negative symptoms of schizophrenia, such as lack of initiation, a lack of concern for personal health, social withdrawal and a lack of motivation [11,12].
For oral health, negative symptoms and low socioeconomic and educational status are risk factors common to tooth decay and periodontal disease [13]. These factors are aggravated by stigmatization and discrimination [14], which can also be attributed to the medications used to manage schizophrenia. Antipsychotics may induce hyposalivation (xerostomia) or hypersalivation, and first-generation antipsychotics may lead to oral dyskinesias [6]. Oral health has both social and functional impacts as it affects the ability to pronounce words and the ability to eat. Tooth loss is a symbol of vital physical decline and leads to functional and psychological consequences in terms of communication skills and physical appearance [15]. Finally, poor oral health affects quality of life [16]. Conversely, good oral health is a positive factor in a person's general state of well-being and self-esteem [17].  [19,20]. Coping strategies play a crucial role in the recovery process of PWS; they can be considered as the capacity to cope with and to gain insight into the illness or to solve a problem [20].
The mechanisms of this involvement should be clarified to identify the capacity of PWS to cope with essential self-care on a day-to-day basis for good OHrQOL.
Coping strategies play a crucial role in the recovery process of schizophrenia patients, particularly when the person has to address impediments to accomplish their goals [21]. Coping strategies are conscious efforts used to solve problems or to fulfil needs in daily life. Coping strategies are associated with both subjective (self-esteem and hopelessness) and objective (symptom severity) domains of recovery [22]. The effectiveness of the coping effort depends on the symptoms of the mental illness, such as stress; the individual; and the circumstances [19]. Coping strategies are considered as the evaluation of a transaction between the person and his environment, where certain perceptive, emotional or behavioural processes can help with the management of stressful events [23]. Problem-based coping (changing the problem that causes stress through a combination of efforts to cope with the situation) and emotion-focused coping (regulating the emotional responses to the problem that generates the stress) are two types of coping strategies [20]. Of these two strategies, PWS use more passive emotionfocused strategies, such as avoiding, ignoring and not thinking about the problem [23].
Schizophrenia symptoms often involve the loss of basic skills involved in daily life such as personal hygiene and grooming, budgeting or employment, independent living and time management. Recovering these basic skills is both an indicator of wellness and a toolkit to aid further progress [24]. By identifying simple goals and using proven strategies for achieving them, a higher quality of life can be attained; thirty percent of patients with schizophrenia manage without antipsychotic medicines after ten years of the disease, without falling back into a psychosis [25].
As far we know, coping strategies used by PWS to adapt to poor OHrQOL, which lead to neglect in oral health, have never been explored.
We hypothesized that a self-administered questionnaire for PWS that focuses on oral health coping should contribute to a better understanding of oral health needs. For caregivers, this information could inform care strategies to encourage positive behaviour in oral health and improve OHrQOL of PWS.
The aim of this work was to present appropriate tools developed to evaluate the coping strategies in OHrQOL implemented by the patients and a feasibility study.

Generation of items for coping in oral health
Semi-structured interviews with 20 PWS and six health professionals (one dentist, one doctor, one psychiatrist, one psychologist, and two nurses) [26] and two FGs [27] were it targets a specific group or type of individual. It is not possible for researchers to collect data from everyone in a community. The aim of our study was to include all issues relating to OHrQOL and to obtain a "point of saturation" [35] regarding the themes addressed by the PWS and the HP who managed patient care.
Thirty-four individuals participated in the study. The sample size was sufficient to obtain a "point of saturation" for the data [35]. Data for the semi-structured interview and the FG were compiled at a site of the Chartreuse Hospital that was conducive to discussion.
All individual interviews and FGs were audio recorded, transcribed by an administrative assistant, converted into verbatim accounts, and analysed using a reading grid. Our aim was to identify emergent or repetitive themes and patterns throughout the transcript and to interpret data accurately from the participants' perspectives and selected potential items, e.g., assertions likely to be included in the selfreport questionnaire [36].
All transcripts were analysed by the psychologist who had recorded the semistructured interview and conducted the FG.
In the first selection, duplicate words for word items were eliminated. However, if a sub-theme was cited at least once, the repeated item was retained and referenced. Double negatives and negative words were avoided through rewording.
A consensus meeting was held with the WG to seek evidence of the respective views until all themes and sub-themes were agreed upon.
Only items related to the concept of coping in OHrQOL were validated.

Feasibility Study Acceptability questionnaire
A feasibility study was conducted with another group of 30 PWS recruited at Chartreuse Hospital. We used the same inclusionexclusion criteria as that used for the SCOOHP.
Sociodemographic data were collected, and the purpose of the feasibility study was to determine whether the patients found the SCOOHP questions clearly understandable, awkward, disturbing or surprising. We also sought to establish if certain questions could be added or if certain individuals had problems answering this questionnaire. Acceptability criteria, such as the time taken for completion, the amount of missing data, and the number of patients who did not return or who refused to participate were equally assessed.
The SCOOHP was a self-administered questionnaire with five possible answers for each item. These were matched with scores from 1 to 5, where "1" meant "strongly disagree" and "5" meant "strongly agree". Scores from the positively worded questions were reversed to calculate the overall score so that the direction of all responses was the same. We used smileys to help the PWS answer the questions.  [38].

Item-level analysis
The SAS ® software was used for statistical analyses.

The translation process of the SCOOHP in English (Figure 1)
The following protocol was used. Initially, two translations (French to English) were made independently by two bilingual translators in accordance with standard recommendations described in the literature [39,40].

Population Characteristics
The characteristics of the 20 PWS in the first step of the study and the 30 PWS in the feasibility study are shown in Table 1.

Generation of items for coping in oral health
The interview guides used for the semistructured interviews and the FGs are shown in

Second step: Feasibility Study and Item-level analysis
The average time needed to complete the SCOOHP questionnaire was 5.7 minutes ± 2.2 (min = 1; max= 10). There was a 100% return rate for the case-report forms (n = 30), and there were no refusals to participate. As reported by 93.3% participants, the "smileys" helped them answer the questionnaire.
Nobody suggested adding new questions to the SCOOHP questionnaire or found that the questions were hard to understand. The SCOOHP was awkward or disturbing for 10% of the PWS, and 16.6% found one question to be surprising; however, they did not specify which one(s). The items were clearly understood and accepted. Ceiling effects were observed with six items (1, 4, 5, 11, 18, and 21). One floor effect was found with item 5. Frequency distributions for the responses of the SCOOHP feasibility study are presented in Table 3.

The translation process of the SCOOHP in English
The English version of the draft prototype of the SCOOHP questionnaire obtained by back translation was approved by the expert committee after some minor suggestions.
The English version of the SCOOHP is shown in

Discussion
The objective of this study was to present the stages of development and a feasibility study for the SCOOHP, a self-administered questionnaire to evaluate coping strategies in OHrQOL that takes into account the knowledge of OHrQOl in PWS. The interviews and FGs discussed the strategies used by patients to adjust to oral disease and thus better accept or improve it.
To capture the essential items of the coping concept in OHrQOL, our group explored comments made by patients and HPs in psychological and adaptive processes in OHrQOL [32,41]. The ability of PWS to discuss their condition remains an issue of debate in the psychiatric community [42], which can explain why most of the scales to explore perception in quality of life for PWS were generated either from the literature or expert opinions [42]. In our study, 65% of the items were produced by the PWS, and only 15% were produced by the "Some do not even have a toothbrush"/ "We pay attention to whether they take showers every day when they are in hospital, but we do not pay attention to whether they brush their teeth!"/ "we should talk about diet to the dietician"/ "I accompanied Mr. X to the dentist, and it went very well; it had been at least ten years since he had gone to the dentist".
Coping strategies are cognitive and behavioural efforts to manage internal and external demands that tax or exceed the person's resources [43]. In OHrQOL, we observed that both positive and negative coping were highlighted in the questionnaire.
Negative coping was the strategy used by patients to adjust to the disease but not to improve OHrQOL. In contrast, positive coping was the strategy used by patients to improve their OHrQOL. Negative coping refers to four distinct problems that impacted oral health.
Poor dietary habits included snacking (item 9), poor nutrition (item 10), and the frequent consumption of sweet foods (items 6). The second problem was poor oral hygiene (items 13 and 20); the third was comorbid substance use including tobacco, alcohol or psychostimulants (items 7); and the fourth was barriers to accessing dental care (items 23).
Studies highlight that PWS are at a greater risk of oral diseases because of poor nutrition and oral hygiene; the heavy consumption of sugary drinks; comorbid substance misuse including tobacco, alcohol or psychostimulants; and financial or other barriers to accessing dental care [44,45]. Furthermore, PWS had low motivation for oral healthcare [46]. being [47]. The PWS is in the best position to know how the disease interferes with his/her overall well-being. Well-being on a daily basis and the ability to make life plans emerged in our research as a positive outlook. In contrast, a negative outlook is related to depression and is associated with poor oral health [48,49].
Our results confirmed that coping strategies for schizophrenics play a crucial role in the mental health recovery processes [19] and in OHrQOL. We observed that the coping strategies were associated with both subjective (like self-esteem) and objective (negative symptoms) domains of recovery [22]. Poor diet and lifestyle behaviour (diet rich in sugar, use of psychoactive substances, and inadequate oral hygiene) contribute to poor health and  [6].
Coping strategies are described as the evaluation of a transaction between the person and his environment, where certain perceptive, emotional or behavioural processes can help the person cope with stressful events [23].
Generally, dental visits or accessibility to dental care generate major stress for PWS, which is one reason for their infrequent dentist visits [50].
The cost of dental care, difficult relationships with professional care givers, or general obstacles related to the health system in terms of access to private care are evoked as stresscausing factors for persons with severe mental illness. In this case, a rational presentation of the causal links between stress factors is sorely needed if we wish to treat patients successfully over a long term [51].
The selection of items of the SCOOHP questionnaire is in accordance with Gronholm et al. [52]. There are different types of coping when PWS have been under significant stress.
PWS can avoid and deny the stressful situation, in which case, coping is centred on emotion in the SCOOHP (for example, items 13 and 20).
If PWS seek support from others, coping is centred on the search for social support (items

Strengths and limitations
One strength of this study is its systematic Although the included PWS were stable from a psychiatric perspective, the potential unreliability of the information elicited from the patients was one of the challenges of this study. Psychiatric diagnoses may be especially vulnerable to instability over time [53], and an experienced psychologist conducted the interviews to differentiate certain delirious remarks by patients.

Conclusions
To our knowledge, this is the first study that has sought to draw up a specific tool to assess coping strategies in OHrQOL of PWS. The