Variáveis individuais e familiares na adesão terapêutica ao CPAP nos doentes com síndrome de apneia obstrutiva do sono

Abstract

A Síndrome de Apneia Obstrutiva do Sono (SAOS) é a desordem do sono com implicação respiratória mais frequente, sendo, atualmente, reconhecida como um problema de saúde pública, afetando cerca de 30% dos adultos. Esta patologia é caracterizada pela recorrência de episódios de oclusão parcial ou completa da via aérea superior durante o sono, que resulta em dessaturação intermitente de oxigénio e microdespertares, com consequente fragmentação do sono. Daqui resultam um conjunto de sinais e sintomas (sonolência diurna excessiva, roncopatia, cefaleias matinais, nictúria, disfunção erétil, disfunções cognitivas) e alterações cardiovasculares, que levam a implicações claras para a qualidade de vida do doente com SAOS. O tratamento de eleição da SAOS são os sistemas de suporte ventilatório noturno com pressão positiva da via aérea – como o APAP (Auto-Adjusting Positive Airway Pressure), que requer o comprometimento do doente para uma adesão efetiva. No entanto, e contrariando o esperado pela sua eficácia e reversibilidade sintomática garantidas, a adesão a este tratamento é baixa. Este estudo pretendeu caracterizar e definir padrões de adesão ao APAP, compreendendo as mudanças decorridas a nível clínico e psicológico ao longo dos três momentos de avaliação e investigar o valor preditivo das variáveis sociodemográficas, clínicas e psicossociais, em cada momento do estudo e nos padrões de adesão. O estudo realizou-se na Consulta de Patologia Respiratória do Sono do Serviço de Pneumologia do Centro Hospitalar de São João (Porto), com 3 momentos de avaliação, conduzidos durante um período total de 2 anos. O primeiro momento do estudo (T1) decorreu imediatamente após diagnóstico de SAOS e a prescrição para APAP e incluiu 206 doentes. O segundo momento (T2) decorreu após 1 a 2 meses da prescrição e utilização do APAP e o terceiro momento (T3) após 3 a 6 meses da avaliação inicial. No final do estudo, um total de 153 casos foram considerados válidos. O protocolo de avaliação incluiu seis instrumentos: Questionário Sociodemográfico; Hospital Anxiety and depression Scale; Brief Illness Perception Questionnaire; Determinants of Nasal CPAP Compliance Scales; Sleep Apnea Quality of Life índex; e o Family Crisis oriented Evaluation Scales. A avaliação da adesão terapêutica foi realizada através da análise dos dados objetivos armazenados na memória interna do APAP. Os padrões de adesão foram definidos segundo o ponto de corte estabelecido na literatura e definido pelo Serviço Nacional de Saúde (SNS) para a prescrição do tratamento baseado no número de horas utilizado (4h) e a percentagem total dos dias de uso (70%). Ao nível dos resultados, o Estudo 1 permitiu compreender que as mulheres apresentam maior morbilidade psicológica, representam a SAOS emocionalmente mais ameaçadora, bem como identidade e consequências mais negativas da doença e avaliam a sua qualidade de vida como estando mais afetada, a nível do funcionamento diário, do funcionamento emocional e dos sintomas da SAOS, por comparação com os doentes do sexo masculino. O Estudo 2 permitiu chegar a um modelo para predizer os padrões de adesão, distinguidos em fraca, moderada e ótima adesão, consistentes ao longo do tempo que incluiu: a idade, Índice de Apneia-Hipopneia (IAH), fugas, coping espiritual, coping para a mobilização da família e reenquadramento, autoeficácia e expectativas de resultado. O Estudo 3 permitiu compreender a Qualidade de Vida relacionada com a Saúde (QVrS) nos padrões de adesão consistentes ao longo do tempo, em que os doentes com fraca adesão no T3, tiveram os mesmos ganhos na QVrS que os doentes com moderada e ótima adesão. Constatou-se ainda que os doentes que não avaliam mudança na QVrS continuaram a ter uma perceção mais negativa da doença ao longo do tratamento, independentemente do seu padrão de uso. O Estudo 4 permitiu chegar a um modelo que integra constructos teóricos, para predizer os padrões de uso do APAP, distinguidos em fraca adesão e adesão, assumindo a evolução no tempo e as possíveis relações entre si, que incluiu: a idade, a interação entre representações cognitivas e tempo, a interação entre a autoeficácia e o coping familiar, o balanço de decisões e a QVrS. Por fim, o Estudo 5 avaliou o papel mediador das representações da SAOS na relação entre a autoeficácia e a QVrS e entre o coping familiar e a QVrS, nos doentes aderentes e com fraca adesão, no T2. Em conclusão, os estudos apresentados evidenciam o papel dos fatores psicológicos, nomeadamente, autoeficácia, expectativas de resultado, balanço de decisões, representações de doença e coping familiar, em diferentes padrões de adesão ao APAP. Os dados salientam a necessidade de avaliação e intervenção dos determinantes da adesão terapêutica, ao longo do tempo. Os resultados chamam ainda a atenção para a necessidade de intervir nos doentes com padrão de adesão fraca, que tendo por base as diretrizes atuais viriam o seu tratamento descontinuado, e que de acordo com o presente trabalho, apresentam benefícios ao nível da QVrS, após 3 a 6 meses de tratamento. Enfatiza-se assim mais uma vez a necessidade de equipas multidisciplinares no SNS, de forma a promover a adesão terapêutica à ventilação noturna, dos doentes com SAOS.

Obstructive Sleep apnea (OSA) is the most prevalent breath-related sleep disorder, being an important public health problem, with an estimate prevalence of 30% in adults. This disease is characterized by an intermittent occurrence of upper airway occlusion during sleep, resulting in oxygen desaturations and arousals, causing sleep fragmentation. As a result, a set of signs and symptoms occurred (excessive daytime sleepiness, snoring, morning headaches, nocturia, erectile dysfunction, cognitive impairment) and cardiovascular abnormalities, which have impact on OSA patients’ quality of life. Nocturnal ventilator support with positive airway pressure – as APAP (Auto-Adjusting Positive Airway Pressure) is the treatment of choice for OSA, which requires the commitment of the patients to an effective adherence. However, contrary to the efficacy and symptoms’ guarantee reversibility, adherence to this treatment is low. The present study aimed to characterized and define adherence patterns to APAP, in order to understand the clinical and psychological changes over the three time assessments and study the predictive value of socio-demographic, clinical and psychological variables, in each assessment moment and regarding adherence patterns. This study, with three time assessments, was conducted in a Sleep Disorder Breathing Clinic of a Hospital Center in Oporto, over a total period of 2 years. The first moment of the study (T1) took place immediately after OSA diagnosis and the prescription for APAP and included a total of 206 patients. The second (T2) and third (T3) moment of the study were held after 1 to 2 months and 3 to 6 months of APAP, respectively. At the end of the study, a total of 153 cases were considered valid. A standardized evaluation protocol included six instruments: Socio-demographic questionnaire; Hospital Anxiety and depression Scale; Brief Illness Perception Questionnaire; Determinants of Nasal CPAP Compliance Scales; Sleep Apnea Quality of Life Index; and Family Crisis oriented Evaluation Scales. The objective measurement of APAP adherence was obtained by downloading the information saved in APAP cards. The selected cut-off point for define adherence patterns was based on average number of hours used (4h) and the percentage of total usage (70%), accordingly to the established in the literature and defined by the National Health Service (NHS). In terms of results, Study 1 allowed to understand that women showed greater psychological morbidity, represent OSA emotionally more threatening, as well as identity and negative consequences of disease and evaluate their quality of life as being more impaired in terms of daily and emotional functioning of OSA, compared with male patients. Study 2 enable the creation of a model to predict the adherence patterns, differentiated in poorly, moderate and optimal adherence, consistent over time which included: age, apnea-hypopnea index (AHI), leakage, spiritual coping, mobilizing family for acquire support and reframing, self-efficacy and outcome expectations. Study 3 aimed to understand Health Related Quality of life (HRQoL) in consistent adherence patterns over time, finding that poorly adherent patient in T3 had the same HRQoL gains than patients with moderate and optimal adherence. Patients with no HRQoL’s changes continued to have more threatening illness representations during treatment, regardless of their usage pattern. Study 4 enable the creation of a model that integrated theoretical constructs to predict APAP’s usage patterns, differentiated in poor adherence and adherence, assuming a time evolution and the possible relationships between them, which included: age, the interaction between cognitive representations and time, the interaction between self-efficacy and family coping, decisional balance and HrQoL. Finally, Study 5 assessed the mediating role of OSA representations in the relationship between self-efficacy and HRQoL and between family coping and HRQoL in poorly adherent and adherent patients, in T2. In conclusion, all the studies presented highlighted the role of psychological variables, namely, self-efficacy, outcome expectations, decisional balance, illness representations and family coping in different adherence patterns of APAP. The data emphasize the need for evaluation and intervention of the determinants of adherence over time. The results emphasized the need to intervene in patients with poor adherence, which based on current Portuguese Health guidelines would see their treatment discontinued, and according to this study, showed benefits in terms of HRQoL after 3 to 6 months of treatment. Therefore, the need for multidisciplinary teams in the NHS to promote adherence to nocturnal ventilation in OSA patients, is once more emphasized.

Obstructive Sleep apnea (OSA) is the most prevalent breath-related sleep disorder, being an important public health problem, with an estimate prevalence of 30% in adults. This disease is characterized by an intermittent occurrence of upper airway occlusion during sleep, resulting in oxygen desaturations and arousals, causing sleep fragmentation. As a result, a set of signs and symptoms occurred (excessive daytime sleepiness, snoring, morning headaches, nocturia, erectile dysfunction, cognitive impairment) and cardiovascular abnormalities, which have impact on OSA patients’ quality of life. Nocturnal ventilator support with positive airway pressure – as APAP (Auto-Adjusting Positive Airway Pressure) is the treatment of choice for OSA, which requires the commitment of the patients to an effective adherence. However, contrary to the efficacy and symptoms’ guarantee reversibility, adherence to this treatment is low. The present study aimed to characterized and define adherence patterns to APAP, in order to understand the clinical and psychological changes over the three time assessments and study the predictive value of socio-demographic, clinical and psychological variables, in each assessment moment and regarding adherence patterns. This study, with three time assessments, was conducted in a Sleep Disorder Breathing Clinic of a Hospital Center in Oporto, over a total period of 2 years. The first moment of the study (T1) took place immediately after OSA diagnosis and the prescription for APAP and included a total of 206 patients. The second (T2) and third (T3) moment of the study were held after 1 to 2 months and 3 to 6 months of APAP, respectively. At the end of the study, a total of 153 cases were considered valid. A standardized evaluation protocol included six instruments: Socio-demographic questionnaire; Hospital Anxiety and depression Scale; Brief Illness Perception Questionnaire; Determinants of Nasal CPAP Compliance Scales; Sleep Apnea Quality of Life Index; and Family Crisis oriented Evaluation Scales. The objective measurement of APAP adherence was obtained by downloading the information saved in APAP cards. The selected cut-off point for define adherence patterns was based on average number of hours used (4h) and the percentage of total usage (70%), accordingly to the established in the literature and defined by the National Health Service (NHS). In terms of results, Study 1 allowed to understand that women showed greater psychological morbidity, represent OSA emotionally more threatening, as well as identity and negative consequences of disease and evaluate their quality of life as being more impaired in terms of daily and emotional functioning of OSA, compared with male patients. Study 2 enable the creation of a model to predict the adherence patterns, differentiated in poorly, moderate and optimal adherence, consistent over time which included: age, apnea-hypopnea index (AHI), leakage, spiritual coping, mobilizing family for acquire support and reframing, self-efficacy and outcome expectations. Study 3 aimed to understand Health Related Quality of life (HRQoL) in consistent adherence patterns over time, finding that poorly adherent patient in T3 had the same HRQoL gains than patients with moderate and optimal adherence. Patients with no HRQoL’s changes continued to have more threatening illness representations during treatment, regardless of their usage pattern. Study 4 enable the creation of a model that integrated theoretical constructs to predict APAP’s usage patterns, differentiated in poor adherence and adherence, assuming a time evolution and the possible relationships between them, which included: age, the interaction between cognitive representations and time, the interaction between self-efficacy and family coping, decisional balance and HrQoL. Finally, Study 5 assessed the mediating role of OSA representations in the relationship between self-efficacy and HRQoL and between family coping and HRQoL in poorly adherent and adherent patients, in T2. In conclusion, all the studies presented highlighted the role of psychological variables, namely, self-efficacy, outcome expectations, decisional balance, illness representations and family coping in different adherence patterns of APAP. The data emphasize the need for evaluation and intervention of the determinants of adherence over time. The results emphasized the need to intervene in patients with poor adherence, which based on current Portuguese Health guidelines would see their treatment discontinued, and according to this study, showed benefits in terms of HRQoL after 3 to 6 months of treatment. Therefore, the need for multidisciplinary teams in the NHS to promote adherence to nocturnal ventilation in OSA patients, is once more emphasized.