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1.
BMC Health Serv Res ; 19(1): 101, 2019 Feb 06.
Artigo em Inglês | MEDLINE | ID: mdl-30728004

RESUMO

BACKGROUND: Cancer patients of reproductive age are at risk of infertility as a result of their treatment. Oncofertility decision support resources can assist patients with fertility decision-making before treatment yet available oncofertility resources contain varying levels of detail and different fertility options. The key information/sections needed in oncofertility resources remain unclear. To explore the information needs for oncofertility decision-making before cancer treatment, we aimed to evaluate existing oncofertility decision support resources with breast cancer patients and providers. METHODS: We conducted 30 to 90-min interviews that included a survey questionnaire and open-ended questions with patients and providers between March and June 2016. Interviews were transcribed verbatim. Analysis involved descriptive statistics for survey responses and thematic analysis of qualitative data. RESULTS: A total of 16 participants completed interviews. Key information perceived by most participants as necessary for fertility decision-making included tailored post-treatment pregnancy rates, cost ranges and financial assistance for the fertility options based on patients' situation. However, patient and provider participants expressed differing opinions on the inclusion of all before and after treatment fertility options and the amount of fertility information required at diagnosis. CONCLUSION: The evaluation identified fertility information needs among patients in addition to providers' views on patient needs. While existing oncofertility resources contain information perceived as necessary for decision-making there is an opportunity to use these findings to create or enhance resources to better meet the needs of patients. Additionally, patients and providers differing views on information needs highlight the opportunity for provider training to ensure better communication using resources in clinic to understand specific patient needs.


Assuntos
Neoplasias da Mama/terapia , Preservação da Fertilidade , Educação de Pacientes como Assunto , Adolescente , Adulto , Atitude Frente a Saúde , Neoplasias da Mama/psicologia , Comunicação , Tomada de Decisões , Técnicas de Apoio para a Decisão , Feminino , Pessoal de Saúde , Recursos em Saúde , Humanos , Pessoa de Meia-Idade , Avaliação das Necessidades , Gravidez , Taxa de Gravidez , Apoio Social , Inquéritos e Questionários , Adulto Jovem
2.
BMC Nephrol ; 18(1): 356, 2017 Dec 06.
Artigo em Inglês | MEDLINE | ID: mdl-29212466

RESUMO

BACKGROUND: Collecting patient reported outcome measures (PROMs) via computer-based electronic data capture system may improve feasibility and facilitate implementation in clinical care. We report our initial experience about the acceptability of touch-screen tablet computer-based, self-administered questionnaires among patients with chronic kidney disease (CKD), including stage 5 CKD treated with renal replacement therapies (RRT) (either dialysis or transplant). METHODS: We enrolled a convenience sample of patients with stage 4 and 5 CKD (including patients on dialysis or after kidney transplant) in a single-centre, cross-sectional pilot study. Participants completed validated questionnaires programmed on an electronic data capture system (DADOS, Techna Inc., Toronto) on tablet computers. The primary objective was to evaluate the acceptability and feasibility of using tablet-based electronic data capture in patients with CKD. Descriptive statistics, Fischer's exact test and multivariable logistic regression models were used for data analysis. RESULTS: One hundred and twenty one patients (55% male, mean age (± SD) of 58 (±14) years, 49% Caucasian) participated in the study. Ninety-two percent of the respondents indicated that the computer tablet was acceptable and 79% of the participants required no or minimal help for completing the questionnaires. Acceptance of tablets was lower among patients 70 years or older (75% vs. 95%; p = 0.011) and with little previous computer experience (81% vs. 96%; p = 0.05). Furthermore, a greater level of assistance was more frequently required by patients who were older (45% vs. 15%; p = 0.009), had lower level of education (33% vs. 14%; p = 0.027), low health literacy (79% vs. 12%; p = 0.027), and little previous experience with computers (52% vs. 10%; p = 0.027). CONCLUSIONS: Tablet computer-based electronic data capture to administer PROMs was acceptable and feasible for most respondents and could therefore be used to systematically assess PROMs among patients with CKD. Special consideration should focus on elderly patients with little previous computer experience, since they may require more assistance with completion.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Insuficiência Renal Crônica , Terapia de Substituição Renal , Adulto , Fatores Etários , Idoso , Computadores de Mão/estatística & dados numéricos , Estudos Transversais , Registros Eletrônicos de Saúde/organização & administração , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Melhoria de Qualidade , Insuficiência Renal Crônica/diagnóstico , Insuficiência Renal Crônica/psicologia , Insuficiência Renal Crônica/terapia , Terapia de Substituição Renal/métodos , Terapia de Substituição Renal/estatística & dados numéricos , Inquéritos e Questionários
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