Most research examining the impact of patients seeking online health information treats internet information homogenously, rather than recognizing that there are multiple types and sources of available information. The present research was conducted to differentiate among sources and types of internet information that patients search for, intend to discuss with their doctors, and recall discussing with their doctors, and to determine how accurate and hopeful patients rate this information.

We surveyed 70 breast cancer patients recruited from the waiting rooms of breast medical oncology and surgery clinics. The main variables in the study were as follows: (1) the sources and types of online information patients have read, intended to discuss, and actually discussed with their doctors, and (2) how accurately and hopefully they rated this information to be.

Patients read information most frequently from the websites of cancer organizations, and most often about side effects. Patients planned to discuss fewer types of information with their doctors than they had read about. They most often intended to discuss information from cancer organization websites or WebMD, and the material was most often about alternative therapies, side effects, and proven or traditional treatments. Some 76.8% of total participants rated the information they had read as very or somewhat accurate, and 61% rated the information they had read as very or somewhat hopeful.

Internet information varies widely by source and type. Differentiating among sources and types of information is essential to explore the ways in which online health information impacts patients' experiences.

The aim of our study was to explore the impact of gender and hematological cancer grade on distress, anxiety, and depression in patients receiving chemotherapy.

A prospective study was done in a cohort of 104 patients with hematological cancer. We employed the (1) Distress Thermometer (DT) and the Problem List (PL) and (2) the Hospital Anxiety and Depression Scale (HADS) for assessments at baseline (T1), the halfway timepoint (T2), and completion of chemotherapy (T3).

The proportion of patients experiencing significant distress (DT ≥ 4) decreased from the first to the last timepoint; the proportion experiencing anxiety and depression (as assessed by HADS) also decreased. Specifically, 50% of participants reported significant distress levels, 47.1% anxiety, and 26% depression at T1. At T2, the proportion of patients experiencing distress was reduced by 60.8%, by 76% for anxiety, and by 48.5% for depression; at T3, the reduction was close to 80% for all assessments compared with T1. Emotional and physical problems were most commonly reported. Significant reductions were discovered for distress and problem-related distress levels over time, and a significant interaction was found between gender and practical and physical problems (p < 0.05).

Our findings suggest that female patients reported more distress, anxiety, and depression than male patients. Gender differences were related to problem-related distress but not to grade of neoplasm. We observed that, over the course of chemotherapy, the distress levels of patients with hematological cancer decrease over time.

To explore the unique lived experiences of one patient who died at home and her family members, and to interpret how dying at home influenced patterns of bereavement for this patient's family.

Benner's (1985) interpretive phenomenological approach was employed to get at the embedded nature of the social phenomenon of dying at home, uncovering what may be taken for granted by participants — in this case, during and after the patient's home hospice course. The participants were a 78-year-old female diagnosed with amyotrophic lateral sclerosis six months prior to death, her husband, and three of her four children. In line with the patient's wish to die at home, she voluntarily forewent food and drink when she no longer wished to watch her body deteriorate and felt that her life had run its course. She informed her family of this plan, and all were supportive. For data collection, separate single in-depth interviews were conducted with the deceased three months prior to death, and after death with three of her four children and her spouse of 60 years. For data analysis, the interview transcripts were coded for paradigm cases, exemplars, and themes.

The paradigm case, “The Meaning of Being at Home,” revealed that for study participants, remaining home with hospice provided a richly familiar, quiet, and safe environment for being together over time and focusing on relationships. Exemplars included “Driving Her Own Course” and “Not Being a Burden.” Salient themes encompassed patient and family characteristics, support, emotions, the value of time, and aspects of the healthcare team.

End-of-life care providers need to hold a patient-centered, family-focused view to facilitate patient and family wishes to remain home to die. Investigation into family relationships, from the perspectives of both patient and family members, longitudinally, may enrich understanding and ability and help patients to die at home.

Self-reported sleep disturbance (SD) is a distressing symptom in patients with advanced cancer. There are limited data on the treatment of SD and predictors to response of SD to outpatient supportive care clinic (OPC) consultation. The aims of our study was to determine the frequency, intensity, and correlates of SD as assessed with the Edmonton Symptom Assessment System (ESAS) sleep item at the time of initial consultation and identify the predictors of improvement in SD at follow-up.

We reviewed the records of consecutive patients with advanced cancer presenting to the OPC. ESAS scores were obtained at the initial and subsequent visits between January 2008 and February 2010. All patients underwent screening for SD (0–10 scale: 0 = best sleep, presence of SD defined as ≥3) and interdisciplinary assessment and treatment, including drug review, counseling, sleep hygiene review, and drug therapy. A response was defined as a 1-point improvement at the follow-up visit on the Edmonton Symptom Assessment Scale (ESAS) sleep item score. Baseline patient characteristics, medication use, and ESAS scores were analyzed to determine their association with response.

The median age was 58 years, and 53% of patients were men. The most common cancer type was head and neck or lung (36%). Of the 442 patients, 330 had baseline SD (score ≥3/10, 75%). Median and mean (standard deviation) baseline SD scores were 5 and 5.1 (2.9). The multivariable regression model found the intensity of baseline ESAS sleep item scores to be associated with baseline sedative use, baseline ESAS pain scores, baseline ESAS fatigue scores, baseline ESAS feeling of well-being scores, and sedative use (R2 = 0.22). Sleep disturbance response at first follow-up was seen in 196 of 330 patients (59%). Moderate to high SD score and anxiety at initial visit with odds ratios (OR) of 2.53 (p = 0.0007) and 1.59 (p = 0.048), respectively, were associated with a response.

Both the frequency and severity of SD were high. Response to supportive care consultation was substantial. The severity of SD and anxiety at the initial visit predicted a response at first follow-up. Further research is needed.

When infants are at risk of being born at a very premature gestation (22–25 weeks), parents face important life-support decisions because of the high mortality for such infants. Concurrently, providers are challenged with providing parents a supportive environment within which to make these decisions. Practice guidelines for medical care of these infants and the principles of perinatal palliative care for families can be resources for providers, but there is limited research to bridge these medical and humanistic approaches to infant and family care. The purpose of this article is to describe how parents at risk of delivering their infant prior to 26 weeks gestation interpreted the quality of their interpersonal interactions with healthcare providers.

Directed content analysis was employed to perform secondary analysis of data from 54 parents (40 mothers and 14 fathers) from the previously coded theme “Quality of Interactions.” These categorized data described parents' encounters, expectations, and experiences of interactions that occurred prenatally with care providers. For this analysis, Swanson's theory of caring was selected to guide analysis and to delineate parents' descriptions of caring and uncaring interactions.

Parents' expectations for caring included: (a) respecting parents and believing in their capacity to make the best decisions for their family (maintaining belief); (b) understanding parents' experiences and their continued need to protect their infant (knowing); (c) physically and emotionally engaging with the parents (being with); (d) providing unbiased information describing all possibilities (enabling); and (e) helping parents navigate the system and creating a therapeutic environment for them in which to make decisions (doing for).

Understanding parents' prenatal caring expectations through Swanson's theory gives deeper insights, aligning their expectations with the palliative care movement.

Continuous deep sedation (CDS) is a way to reduce conscious experience of symptoms of severe suffering in terminally ill cancer patients. However, there is wide variation in the frequency of its reported. So we conducted a retrospective analysis to assess the prevalence and features of CDS in our palliative care unit (PCU).

We performed a systemic retrospective analysis of the medical and nursing records of all 1581 cancer patients who died at the PCU at Higashi Sapporo Hospital between April 2005 and August 2011. Continuous deep sedation can only be administered safely and appropriately when a multidisciplinary team is involved in the decision-making process. Prior to administration of CDS, a multidisciplinary team conference (MDTC) was held with respect to all the patients considered for CDS by an attending physician. The main outcome measures were the frequency and characteristics of CDS (patient background, all target symptoms, medications used for sedation, duration, family's satisfaction, and distress). We mailed anonymous questionnaires to bereaved families in August 2011.

Of 1581 deceased patients, 22 (1.39%) had received CDS. Physical exhaustion 8 (36.4%), dyspnea 7 (31.8%), and pain 5 (22.7%) were the most frequently mentioned indications. Continuous deep sedation had a duration of less than 1 week in 17 (77.3%). Six patients (0.38%) did not meet the appropriate criteria for CDS according to the MDTC and so did not receive it. Although bereaved families were generally comfortable with the practice of CDS, some expressed a high level of emotional distress.

Our results indicate that the prevalence of CDS will be decreased when it is carried out solely for appropriate indications. Continuity of teamwork, good coordination, exchange of information, and communication between the various care providers are essential. A lack of any of these may lead to inadequate assessment, information discrepancies, and unrest.

Most patients prefer to die at home, but barely 30% do so. This study examines the variables contributing to dying at home.

The participants were 326 cancer patients, of both genders, with a mean age of 63.25 years, who died from 2000 to 2008 and were treated by the palliative care unit of the Barzilai Hospital. Some 65.7% died at home and 33.4% in a hospital. The data were extracted from patient files. The examined variables were demographic (e.g., age, gender, marital status, ethnic background, number of years in Israel until death), medical (e.g., age at diagnosis, diagnosis, nature of last treatment, patient received nursing care, patient given the care of a social worker, patient had care of a psychologist, family received care of a social worker, patient had a special caregiver), and sociological (e.g., having insurance, having worked in Israel, living alone or with family, living with one's children, living in self-owned or rented house, family members working).

The findings indicate that the chances of dying at home are higher if the patient is non-Ashkenazi, the family got social worker care, the patient lived in a self-owned house, the patient lived with his family, the family members worked, and the patient's stay in Israel since immigration was longer. Logistic regression showed that all the predictors together yielded a significant model accounting for 10.9–12.3% of the variance.

The findings suggest that dying at home requires maintaining continued care for the patient and family in a community context.

Subjective reports on the effectiveness of and satisfaction with writing interventions in medical populations have indicated that they can have a profound impact on patients. Further, past research on these programs has demonstrated that they can lead to a number of different positive outcomes depending on the personal characteristics of the participating patients and the type of writing with which they are tasked. For this reason, a flexible and individually tailored writing intervention may be particularly effective for patients, molding its approach to their desires and backgrounds. This paper examines Visible Ink, a writing program for cancer patients at Memorial Sloan-Kettering Cancer Center (MSKCC) that follows this model.

At Visible Ink's First Fall Writing Festival in November 2012, an optional survey was provided to all program participants in attendance, capturing both quantitative and qualitative information on patient experiences in the program. Twenty-nine surveys were completed.

The program appears to have a variety of positive effects, including fostering personal growth and providing a positive distraction. Respondents reported that they write in a number of different genres on topics both related and not related to their illnesses, which supports the flexible model of the program. All respondents indicated that they would recommend the program to others, and satisfaction with the program's general approach (i.e., individualized work with a writing coach) was unanimous. A few areas for potential improvement were also identified, most of which involved expanding the services and events offered by the program.

Despite the limitations of this survey (e.g., small sample size and low response rate), its results support the promise of the Visible Ink model and demonstrate participants' satisfaction with the program. Future research can more thoroughly examine Visible Ink's effectiveness, and additional resources could enable the program to expand.

Due to multiple issues, integrated interdisciplinary palliative care teams in a neonatal intensive care unit (NICU) may be difficult to access, sometimes fail to be implemented, or provide inconsistent or poorly coordinated care. When implementing an effective institution-specific neonatal palliative care program, it is critical to include stakeholders from the clinical, operational, and financial worlds of healthcare. In this study, researchers sought to gain a multidisciplinary perspective into issues that may impact the implementation of a formal neonatal palliative care program at a tertiary regional academic medical center.

In this focused ethnography, the primary researcher conducted semistructured interviews that explored the perspectives of healthcare administrators, finance officers, and clinicians about neonatal palliative care. The perspectives of 39 study participants informed the identification of institutional, financial, and clinical issues that impact the implementation of neonatal palliative care services at the medical center and the planning process for a formal palliative care program on behalf of neonates and their families.

Healthcare professionals described experiences that influenced their views on neonatal palliative care. Key themes included: (a) uniqueness of neonatal palliative care, (b) communication and conflict among providers, (c) policy and protocol discrepancies, and (d) lack of administrative support.

The present study highlighted several areas that are challenging in the provision of neonatal palliative care. Our findings underscored the importance of recognizing and procuring resources needed simultaneously from the clinical, operational, and financial worlds in order to implement and sustain a successful neonatal palliative care program.

Delirium affects all higher cortical functions supporting complex information processing consistent with widespread neural network impairment. We evaluated the relative prominence of delirium symptoms throughout episodes to assess whether impaired consciousness is selectively affecting certain brain functions at different timepoints.

Twice-weekly assessments of 100 consecutive patients with DSM-IV delirium in a palliative care unit used the Delirium Rating Scale Revised-98 (DRS-R98) and Cognitive Test for Delirium (CTD). A mixed-effects model was employed to estimate changes in severity of individual symptoms over time.

Mean age = 7 0.2 ± 10.5 years, 51% were male, and 27 had a comorbid dementia. A total of 323 assessments (range 2–9 per case) were conducted, but up to 6 are reported herein. Frequency and severity of individual DRS-R98 symptoms was very consistent over time even though the majority of patients (80%) experienced fluctuation in symptom severity over the course of hours or minutes. Over time, DRS-R98 items for attention (88–100%), sleep–wake cycle disturbance (90–100%), and any motor disturbance (87–100%), and CTD attention and vigilance were most frequently and consistently impaired. Mixed-effects regression modeling identified only very small magnitudes of change in individual symptoms over time, including the three core domains.

Attention is disproportionately impaired during the entire episode of delirium, consistent with thalamic dysfunction underlying both an impaired state of consciousness and well-known EEG slowing. All individual symptoms and three core domains remain relatively stable despite small fluctuations in symptom severity for a given day, which supports a consistent state of impaired higher cortical functions throughout an episode of delirium.

Cancer patients and their caregivers often turn to the internet for information and support following a cancer diagnosis. Research shows a need for improvement in doctors' communication with patients about internet information. The purpose of this formative assessment was to evaluate oncology trainees' skills in talking about internet information with cancer patients.

Thirty-nine oncology trainees were evaluated in a baseline standardized patient assessment as part of their participation in the Comskil Training Program. As part of the assessment, standardized patients were instructed to raise the topic of internet information they had read. Transcriptions of the video-recorded assessments were coded for patient statements and trainee responses.

Fifty-six percent of trainees used a probe to get more information before addressing the content of the internet search, while 18% addressed it immediately. Eighteen percent of trainees warned the patient about using the internet, and 8% warned about and also encouraged internet use. Thirteen percent of trainees praised the patient for seeking out information on the internet.

This formative assessment indicated that the majority of trainees addressed the content of the internet search, while a minority addressed the internet as a tool and praised patients' efforts. Research in this area should examine the effectiveness of educational interventions for trainees to improve discussions about internet information.

To explore how patients experience being in the hospital environment and the meaning they assign to the environment during serious illness.

A qualitative study design was applied, and the data analysis was inspired by Ricoeur's phenomenological-hermeneutic theory of interpretation. Data were collected through multiple qualitative interviews combined with observations at a teaching hospital in Denmark from May to September 2011. A total of 12 patients participated.

The findings showed that the hospital environment has a strong impact on patients' emotions and well-being. They reported that aesthetic decorations and small cozy spots for conversation or relaxation created a sense of homeliness that reinforced a positive mood and personal strength. Furthermore, being surrounded by some of their personal items or undertaking familiar tasks, patients were able to maintain a better sense of self. Maintaining at least some kind of familiar daily rhythm was important for their sense of well-being and positive emotions.

The results stress the importance of an aesthetically pleasing and homelike hospital environment as part of palliative care, since the aesthetic practice and a sense of homeliness strengthened patients' experiences of well-being, relief, and positive emotions while in a vulnerable situation. Such knowledge could encourage the development of new policies regarding appropriate care settings, which in turn could result in overall improved care during serious illness.

Knowledge of symptom prevalence and adequate assessment of such symptoms at the end of life is important in clinical practice. We determined the frequency and severity of symptom distress and delirium using the Edmonton Assessment Scale (ESAS) and the Memorial Delirium Assessment Scale (MDAS) and evaluated the clinical utility of the Nursing Delirium Screening Scale (Nu-DESC) as scored by a caregiver as a screening tool for delirium.

We conducted a secondary analysis of the data from a previous randomized controlled trial on parenteral hydration at the end of life of patients admitted to home hospice. Only patients that had assessments within the last week of life were included. We collected the ESAS, MDAS, Nu-DESC, and Richmond Agitation Sedation Scale (RASS) results. The sensitivity and specificity of the Nu-DESC were then calculated.

Some 78 of 261 patients were included in our study, 62 (80%) of which had moderate-to-severe symptoms corresponding to an ESAS score >4. These symptoms include: 73 (94%) anorexia, 63 (81%) fatigue, 56 (73%) drowsiness, 58 (75%) decreased well-being, and 39 (51%) pain. Delirium was diagnosed in 34 (44%) of patients using the MDAS. The Nu-DESC was found to have a sensitivity of 35%, a specificity of 80%, a positive predictive value (PPV) of 58%, and an negative predictive value (NPV) of 61% when used by caregivers.

Hospice patients at the end of life have a high rate of symptom distress and delirium. The Nu-DESC is not a reliable tool for screening delirium when scoring is conducted by a caregiver. Our study illustrates the need for routine use of assessment tools to improve care.

Given the great number of chronic care patients facing the end of life and the challenges of critical care delivery, there has been emerging evidence supporting the benefit of palliative care in the intensive care unit (ICU). We studied the relationship between the timing of a palliative care consult (PCC) and two utilization outcomes — length of stay (LOS) and pharmacy costs — in ventilator-assisted ICU patients.

A retrospective chart review was conducted (N = 90). Summed pharmacy costs were compared using a paired t test before and after PCC. Spearman correlations were performed between days to PCC and ICU LOS, ventilator days, and days to death following ventilator discontinuation.

Number of days from admission to PCC was correlated with total days on ventilator (ρ = 0.685, p < 0.0001) and total ICU LOS (ρ = 0.654, p < 0.0001). Number of days to PCC was correlated with pre-PCC total medication costs (ρ = 0.539, p < 0.0001). Median medication costs were significantly reduced after the PCC (p < 0.0001), from $230.96 to 30.62. Median medication costs decreased for all categories except for analgesics, antiemetics, and opioids. The number of patients receiving opioid infusion increased (37 vs. 90%) after PCC (p < 0.0001).

Earlier timing for PCC in the ICU is associated with a lower LOS through quicker mechanical ventilation (MV) withdrawal, presenting a unique opportunity to both decrease costs and improve patient care.

The aim of this study was to determine the frequency and factors associated with fall episodes in advanced cancer patients.

We analyzed data that included demographic characteristics, utilization of assistive devices, cancer diagnosis, metastatic site, performance status, medications including hypnotics and opioids, Edmonton Symptom Assessment Scale (ESAS) score, and Memorial Delirium Assessment Scale (MDAS) score in 384 consecutive patients who were newly referred to the Supportive Care Clinic at the MD Anderson Cancer Center from January 1 to December 31, 2009. All patients completed standardized forms to report falls within the last month. Multivariate backward regression analyses were employed to identify factors predictive of falls in advanced cancer.

The mean age of patients was 58 years, and 192 (50%) were male. Mean (SD)/median score for pain was 5 (2.8), 5; fatigue 5.6 (2.6), 6; sleep disturbance 5(2.7), 5; drowsiness 3.7(3), 3; and anorexia 5(3), 5. Some 31 patients (8%) reported fall episodes within the past month, 17 (55%) of whom reported the use of assistive devices. Using assist devices (OR = 5.5, 95% CI: 2.6–11.9, p < 0.0001) and taking zolpidem (OR = 3.39, 95% CI: 1.39–7.7, p = 0.008) were associated with an enhanced chance of falling. Higher MDAS score (4.00 vs. 1.42, p = 0.001) and MDAS positive screening for delirium (21 vs. 3.6%, p < 0.001) were also associated with falls. However, severity on the ESAS at the initial consult was not associated with falls.

We conclude that 31 of 384 patients (8%) with advanced cancer receiving outpatient supportive care reported falls in the previous month. Patients with assistive devices, taking zolpidem, and with a higher MDAS score, and a positive delirium screening reported more frequent falls. Further studies are warranted.

The objective of this study was to explore and contrast the experience and meaning of breathlessness in patients with chronic obstructive pulmonary disease (COPD) or lung cancer at the end of life.

We conducted a qualitative study embedded in a longitudinal study using topic-guided in-depth interviews with a purposive sample of patients suffering from breathlessness affecting their daily activities due to advanced (primary or secondary) lung cancer or COPD stage III/IV. All interviews were audiotaped, transcribed verbatim, and analyzed using framework analysis.

Ten COPD and eight lung cancer patients were interviewed. Both groups reported similarities in their experience. These included exertion through breathlessness throughout the illness course, losses in their daily activities, and the experience of breathlessness leading to crises. The main difference was the way in which patients adapted to their particular illness experience and the resulting crises over time. While COPD patients more likely sought to get their life with breathlessness under control, speaking of daily living with breathlessness under certain conditions, the participating lung cancer patients often faced the possibility of death and expressed a need for security.

Breathlessness leads to crises in patients with advanced disease. Although experiences of patients are similar, reactions and coping mechanisms vary and are more related to the disease and the stage of disease.

Research on women's experiences of cervical cancer as a health problem focuses primarily on cervical screening, while their experiences of cervical cancer as a disease seem to be underresearched. This study addresses this understudied area and aims to yield insight into the experiences of underprivileged women confronted with this disease.

Our study was qualitative, exploratory, and contextual with descriptive and interpretive elements. The context of the study was a radiation oncology department at an academic hospital in the Gauteng Province of South Africa. The target population was all patients diagnosed with cervical cancer referred for treatment at the specific hospital. Convenience sampling selected participants typical of the population. Nineteen open-ended unstructured interviews were conducted after demographic data were collected. One question was posed: “Please tell me what made you think there was something wrong with you?” Thematic analyses were used to analyze the data.

The average age of participants was 47.2 years, with a youngest participant of 29 and oldest of 70. Three themes arose from the data: experiencing the symptoms of cervical cancer, hearing the bad news, and what remained unsaid.

Being confronted with cervical cancer is a traumatic experience. Women suffer unexplained, severe, humiliating vaginal bleeding and unrelieved pain. They have to face a dual healthcare system: on the one hand, unaffordable effective private healthcare and, on the other, the free-of-cost public healthcare that failed them. The bad news of their cervical cancer is most commonly broken in a kind and sympathetic manner, yet misunderstandings and a need for additional information prevail after the bad news conversation. Having to inform their families of their cancer adds to their suffering.

Despite the rapidly growing availability of palliative care services, there is still much to be done in order to better support clinicians who are starting research programs. Among the barriers identified in the literature, methodological issues and lack of research training programs are often reported. Our aim was to describe an educational research method for healthcare professionals working in palliative care and to report the result of a survey conducted among a three-year sample of students.

The course was provided for a multidisciplinary group and was open to all healthcare professionals involved in palliative care. It took place over a single session during a full day. We used a 20-question e-survey to assess student outcomes (e.g., satisfaction, current status of their project).

We received answers from 83 of the 119 students (70%) who took the course. The majority were physicians (n = 62, 75%), followed by nurses (n = 17, 21%). During the class, students assessed the role of the teacher as an information provider (n = 51, 61%), role model (n = 36, 43%), and facilitator (n = 33, 40%), and considered all of these roles as suitable, with a score of 3.9–4.7 out of 5. Participants reported a high level of support from the teacher, with a mean score of 8.2 (SD, 1.7) out of 10, and good overall satisfaction with a mean score of 7.6 (1.8). Finally, 51 participants (77%) were able to start their research project after the class, 27 (41%) to complete it, and 8 (12%) to submit their research to a journal or conference.

Our results suggest that newer teaching methods such as roleplay, group work, and target acquisition are feasible and effective in a palliative research curriculum. Additional studies are needed to confirm the objective outputs of educational interventions, including research outputs.

Consistent use of imatinib is critical for treatment success in chronic myeloid leukemia, yet perfect adherence to the prescribed clinical regimen is reported to be as low as 14%. This study aimed to understand patients' experiences of chronic myeloid leukemia with a qualitative approach, including identified facilitators and barriers to adherence, drawing on patients' and health professionals' perspectives, recording comments made by patients and health professionals involved with the same treatment team.

We recruited patients with chronic myeloid leukemia prescribed imatinib therapy and health professionals involved in their treatment from a specialized cancer center. Semi-structured qualitative interviews were recorded, transcribed, and manually analyzed using interpretive phenomenological analysis. Recruitment ceased upon saturation, with 16 patients and 10 health professionals (hematologists n = 4, nurses n = 3, pharmacists n = 3).

Twelve patients reported at least one instance of nonadherence. Reasons for unintentional nonadherence included forgetfulness related to variations of routine and doctor–patient communication issues. Reasons for intentional nonadherence included desires to reduce dose-dependent side effects and insufficient support. Patients who reported higher nonadherence rates felt complacent following periods of sustained disease control or had received conflicting advice regarding nonadherence. Health professionals had difficulty in accurately evaluating medication adherence due to a lack of reliable measures, utilizing patient self-report and manifestations of suboptimal disease control to guide assessments.

Adherence issues persist throughout the course of treatment. While high patient-reported nonadherence rates were recorded, health professionals were often unaware of the complex causes, compounded by an inadequacy of adherence assessment tools. Some patients reported nonadherence events because of insufficient education or lack of access to prompt medical guidance. These issues should be addressed to improve clinical practice.