BackgroundThose affected by advanced fibrotic interstitial lung diseases have limited treatment options and in the terminal stages, the focus of care is on symptom management. However, quantitatively, little is known about symptom prevalence. We aimed to determine the prevalence of symptoms in Progressive Idiopathic Fibrotic Interstitial Lung Disease (PIF-ILD).MethodsSearches on eight electronic databases including MEDLINE for clinical studies between 1966 and 2015 where the target population was adults with PIF-ILD and for whom the prevalence of symptoms had been calculated.ResultsA total of 4086 titles were screened for eligibility criteria; 23 studies were included for analysis. The highest prevalence was that for breathlessness (54–98%) and cough (59–100%) followed by heartburn (25–65%) and depression (10–49%). The heterogeneity of studies limited their comparability, but many of the symptoms present in patients with other end-stage disease were also seen in PIF-ILD.ConclusionsThis is the first quantitative review of symptoms in people with Progressive Idiopathic Fibrotic Interstitial Lung Diseases. Symptoms are common, often multiple and have a comparable prevalence to those experienced in other advanced diseases. Quantification of these data provides valuable information to inform the allocation of resources.Electronic supplementary materialThe online version of this article (10.1186/s12890-018-0651-3) contains supplementary material, which is available to authorized users.
RESUMO -Não faz sentido falar de cuidados paliativos sem referenciar uma equipa multidisciplinar e interdisciplinar que comporta diferentes profissionais, de diferentes áreas, que apoiem o doente e a família (TWYCROSS, 2003). Este é o desafio que o artigo apresenta, o de poder passar a visão psicossocial que envolve o mundo do doente paliativo e suas famílias, onde os cuidados de saúde considerados ativos estão centrados na dolência do ser humano. Pretende-se aqui contribuir para o conhecimento sobre as famílias no contexto de doença terminal recorrendo à investigação efetuada nesta área sistêmica e ao conhecimento empírico, enquanto investigadores e profissionais no trabalho diário com doentes e famílias em intenso sofrimento. Palavras-chave -Cuidados Paliativos. Famílias. Intervenção Psicossocial.ABSTRACT -It makes no sense to talk about palliative care without referencing a multidisciplinary and interdisciplinary team approach comprising different professionals from different fields, supporting the patient and family (TWYCROSS, 2003). This is our challenge: the challenge to study the psychosocial world of palliative patients and their families, where health care are considered active and centered on the human being. We intend in this paper to contribute to the knowledge of the families in the context of terminal illness using the systemic research done in this area and our empirical knowledge, while researchers and practitioners in their daily work with patients and families in higher distress.
Background: Irrreversible interstitial lung disease (ILD) is associated with high morbidity and mortality. Palliative care needs of patients and caregivers are not routinely assessed; there is no tool to identify needs and triage support in clinical practice.Objective: The study objective was to adapt and face/content validate a palliative needs assessment tool for people with ILD.Methods: The Needs Assessment Tool: Progressive Disease-Cancer (NAT:PD-C) was adapted to reflect the palliative care needs identified from the ILD literature and patient/caregiver interviews. Face and content validity of the NAT:PD-ILD was tested using patient/caregiver focus groups and an expert consensus group. Participants in the study were two English tertiary health care trusts' outpatients clinics. There were four focus groups: two patient (n = 7; n = 4); one caregiver (n = 3); and one clinician (n = 8). There was a single caregiver interview, and an expert consensus group—academics (n = 3), clinicians (n = 9), patients (n = 4), and caregivers (n = 2). Each item in the tool was revised as agreed by the groups. Expert consensus was reached.Results: Overall, the tool reflected participants' experience of ILD. Each domain was considered relevant. Adaptations were needed to represent the burden of ILD: respiratory symptoms (especially cough) and concerns about sexual activity were highlighted. All emphasized assessment of caregiver need as critical, and the role of caregivers in clinical consultations.Conclusions: The NAT:PD-ILD appears to have face and content validity. The inclusion of the family caregiver in the consultation as someone with their own needs as well as a source of information was welcomed. Reliability testing and construct validation of the tool are ongoing.
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