Evaluating provider communication in pediatric chronic kidney disease care using a global coding system

ObjectiveAmong adolescents and young adults (AYAs) with chronic illness, effective provider communication is essential for patient-centered care during a sensitive developmental period. However, communication in chronic illness care for AYAs is not well studied. Our objectives were to describe the provider communication skills in pediatric chronic kidney disease (CKD) care visits; and determine if communication skills differ by AYA characteristics.MethodsWe adapted a global consultation rating system for pediatric subspecialty care using audiotaped clinic encounters of 18 pediatric nephrologists with 99 AYAs (age M(SD) = 14.9(2.6)) with CKD stages 1–5 and 96 caregivers. We hypothesized that provider communication skills would differ by AYA characteristics (age, gender, and race).ResultsThe strongest provider skills included initiating the session and developing rapport; lowest rated skills were asking patient’s perspective and checking understanding. Communication scores did not consistently differ by AYA age or race, but were rated higher with female AYAs in several domains (ps<0.05).ConclusionsPediatric providers generally had adequate or good communication scores with AYAs, but improvement in certain skills, particularly with male AYAs, may further support patient-centered care.Practice implicationsTo achieve consistent, patient-centered communication with AYAs, an observation-based global assessment may identify areas for provider improvement.     

Patient-provider communication in nephrology care for adolescents and young adults

ObjectiveTo compare the relative quantity of talk between providers, caregivers, and adolescents and young adults (AYAs) with chronic kidney disease (CKD) and how communication differs by age.MethodsDuring nephrology clinic visits, conversations between AYAs with CKD (N = 99, ages 11–20, median = 15), their caregivers, and providers (N = 19) were audiotaped and coded using the Roter Interaction Analysis System. Linear mixed models tested AYA age differences in talk frequency by AYAs, caregivers, and providers. Post-hoc analyses tested differences in talk using AYA age groups.ResultsDuring clinic visits, providers spoke the most (63.7%), and caregivers spoke more (22.6%) than AYAs (13.7%). Overall talk differed by AYA age in AYAs (p < 0.001) and caregivers (p < 0.05), but not providers. Higher AYA age was associated with more AYA talk (biomedical information-giving, partnering, rapport-oriented) and less caregiver biomedical information-giving (ps < 0.001–0.05). In post-hoc analyses, young adults talked more than adolescents; caregiver talk decreased in the middle-adolescent group.ConclusionsIncreases in AYA talk occur primarily in young adulthood, whereas caregiver talk decreases in middle adolescence. This may indicate an appropriate developmental shift but raises concerns about conversational gaps during middle-adolescence.Practice implicationsDuring transition-oriented treatment planning, providers should engage both AYAs and caregivers to avoid potential gaps in communication.     

Myeloablative Unrelated Cord Blood Transplantation in Adolescents and Young Adults with Acute Leukemia

Outcomes for adolescents and young adults (AYAs) with leukemia differ from other age groups and are still under-represented in clinical research. The aim of this study was to analyze outcomes of umbilical cord blood transplant (UCBT) in AYAs with acute leukemia reported to Eurocord/European Society for Blood and Marrow Transplantation. Patients (N = 504) had acute lymphoblastic (59%) or myeloid leukemia (41%), were aged 15 to 25 years, and received UCBT after myeloablative conditioning regimens between 2004 and 2016. The primary endpoint was 3-year overall survival (OS). Median follow-up was 3.9 years. Transplant was single in 58% and double UCBT in 42%. Three-year OS was 45% and leukemia free survival (LFS) was 41%. Cumulative incidence functions (CIFs) of nonrelapse mortality (NRM) and relapse were 31% and 28%, respectively. CIF of acute graft-versus-host disease (GVHD) grades II to IV at day 100 was 28%. Three-year CIF of chronic GVHD was 25%. In adjusted analysis, better disease status at UCBT (hazard ratio [HR], 2.74; P < .001) and more recent UCBT (HR, 1.43; P = .01) were associated with increased OS, and a similar effect of these factors was observed on LFS. Contrastingly, the use of antithymocyte globulin had a negative effect in LFS. The risk of acute GVHD grades II to IV increased with the use of double UCBT (HR, 1.65; P = .02) and decreased with more recent transplant period (HR, .65; P = .02) and antithymocyte globulin use (HR, .55; P = .01). Outcomes of AYA UCBT improved in more recent years, becoming comparable with pediatric results. Demonstrating the feasibility of UCBT in AYAs facilitates stem cell source selection and provides the basis for future prospective studies.     

Engagement and Affective Communication During Pediatric Nephrology Clinic Visits: Associations with Medication Adherence

ObjectiveTo evaluate whether engagement and affective communication among adolescents and young adults (AYAs) with chronic kidney disease (CKD), caregivers, and pediatric nephrology providers during outpatient clinic visits predicts antihypertensive medication adherence.MethodsAYAs (n = 60, M age = 15.4 years, SD = 2.7, 40% female, 43% African American/Black) and caregivers (n = 60, 73% female) attended audio-recorded clinic visits with pediatric nephrologists (n = 12, 75% female). Recordings were analyzed using global affect ratings of the Roter Interactional Analysis System. Antihypertensive medication adherence was monitored electronically before and after clinic visits. A linear regression model evaluated associations between affect ratings and post-visit adherence.ResultsAYAs took 84% of doses (SD = 20%) pre-visit and 82% of doses (SD = 24%) post-visit. Higher AYA engagement (β = 0.03, p = .01) and the absence of provider negative affect (β=-0.15, p = .04) were associated with higher post-visit adherence, controlling for pre-visit adherence, AYA sex, age, and race, and clustered by provider.ConclusionsPost-visit adherence was higher when AYAs were rated as more engaged and providers as less negative.Practice ImplicationsAYAs with lower engagement may benefit from further adherence assessment. Communication strategies designed to more actively engage AYAs in their care and diminish provider conveyance of negative affect during clinic visits may positively influence adherence among AYAs with CKD.     

Specific healthcare responsibilities and perceived transition readiness among adolescent solid organ transplant recipients: Adolescent and caregiver perspectives

ObjectiveAdolescents and young adults (AYAs) with solid organ transplants must attain responsibility for healthcare tasks during transition to adult healthcare. However, healthcare systems often initiate transfer based on age and not independence in care. This study examines specific responsibilities distinguishing AYA organ transplant recipients reporting readiness to transfer.Methods65 AYAs (ages 12–21) with heart, kidney, or liver transplants and 63 caregivers completed questionnaires assessing AYA’s transition readiness, healthcare responsibility, and executive functioning. Categorizations included mostly/completely ready versus not at all/somewhat ready to transition; responsibility was compared between groups.Results42% of AYAs and 24% of caregivers reported AYAs as mostly/completely ready to transition. AYAs mostly/completely ready reported similar routine healthcare responsibility (e.g., medication taking, appointment attendance), but greater managerial healthcare responsibility (e.g., knowing insurance details, appointment scheduling), compared to AYAs not at all/somewhat ready to transition.ConclusionsAll AYAs should be competent in routine healthcare skills foundational for positive health outcomes. However, the managerial tasks distinguish AYAs perceived as ready to transfer to adult healthcare.Practice implicationsEmphasis on developing responsibility for managerial tasks is warranted. The Hierarchy of Healthcare Transition Readiness Skills is a framework by which AYA responsibility can be gradually increased in preparation for transfer.     

Quality-of-Life Trajectories in Adolescent and Young Adult versus Older Adult Allogeneic Hematopoietic Cell Transplantation Recipients

Hematopoietic cell transplantation (HCT) is physically and psychologically challenging, potentially exposing patients to quality-of-life (QoL) impairments. Adolescent and young adults (AYAs, aged 15 to 39 years) are a vulnerable cohort facing multiple hurdles due to dynamic changes in several aspects of their lives. The AYA population may be particularly prone to QoL issues during HCT. We hypothesized that due to the unique psychosocial challenges faced by AYAs, they would have an inferior quality of life. We studied QoL differences between AYA (aged 15 to 39 years) and older adult (aged 40 to 60 years) allogeneic HCT recipients before and after HCT. Additionally, we determined if pre-HCT QoL for AYA transplant recipients changed over time. QoL data were collected prospectively before and after transplant on 431 recipients aged 15 to 60 years from June 2003 through December 2017 using the Functional Assessment of Cancer Therapy-Bone Marrow Transplantation (FACT-BMT) questionnaire. Repeated-measures analysis of variance was used to assess differences among age groups. Pearson correlation (r) was used to determine if baseline QoL had improved after HCT from June 2003 through December 2017 in the AYA cohort. QoL did not differ among younger AYAs, older AYAs, or older adults at any time in the first year after allogeneic HCT. At 1 year post-HCT, total FACT-BMT score and all FACT-BMT domains except physical well-being improved from pre-HCT in all age groups. From 2003 to 2017, AYA allogeneic recipients experienced modest improvement in additional concerns (r = 0.26, P = .003), trial outcome index (r = 0.23, P = .008), and total FACT-BMT score (r = 0.19, P = .031), although no improvements were seen in physical, social, emotional, or functional well-being. Contrary to our hypothesis, we found that QoL in the AYA population is similar to that of older adults before and after HCT. Improvements in QoL of AYA allogeneic patients since 2003 were driven by the additional concerns domain, which addresses multiple psychosocial aspects such as vocation, hobbies, and acceptance of illness. Continued efforts to tailor treatment and support for AYA HCT recipients is critical to improving QoL outcomes.     

Patients’ challenges,competencies, and perceived support in dealing with information needs – A qualitative analysis in patients with breast and gynecological cancer

ObjectivesThis study aimed to investigate challenges, competencies, and support in breast and gynecological cancer patients when dealing with information needs and how health literacy as an interplay of these factors might be improved.MethodsSemi-structured interviews were conducted with patients in acute care (n = 19), undergoing rehabilitation (n = 20) or attending self-help groups (n = 16). Interviews were analyzed using content analysis.ResultsChallenges: gain information according to own needs, internet as information source, information evaluation and decisions, doctor-patient communication, situationally limited information processing, difficult access to information. Competencies: self-regulation of information needs, media and social competencies, communication skills in the doctor-patient conversation, internet competencies, self-directed decisions according to own needs, interest/self-efficacy, previous knowledge, trust in the doctor. Support: by professionals (e.g., patient-centered communication), relatives (e.g., support during consultations), peers (e.g., exchange), facilities (e.g., clinics).ConclusionsOur findings provide insight into challenges and competencies relevant to patients’ health literacy and the influence of support. The individuality of the interplay highlights the relevance of an active patient role and patient-centered care.Practice implicationsPatients’ health literacy should be improved in (psycho)oncological work by both reducing challenges (e.g., by communication skills training, involving relatives) and promoting competencies (e.g., by needs- and competence-oriented information offers).     

Patient-provider communication during second opinion consultations in oncology

ObjectiveProviding a second opinion (SO) in oncology is complex, and communication during SOs remains poorly understood. This study aimed to systematically observe how patients and oncologists communicate about SO-specific topics (i.e., patient motivation, the referring oncologist, treatment transfer/back-referral), and how such communication affects patient satisfaction.MethodsA prospective mixed-methods study of cancer patients seeking a SO (N = 69) and consulting oncologists was conducted. Before the SO, patients reported their expected place of future treatment. Following the SO, patients’ and oncologists’ satisfaction was assessed. All SOs were audio-recorded. Absolute and relative duration of SO-specific talk were calculated and specific events (e.g., questions/utterances) were coded (incl. valence, explicitness).ResultsSOs lasted 19–73 min, of which 3.7% was spent discussing motivations. Oncologists rarely explored patients’ motivations. Talk about referring oncologists (12.5% of consultation) was mostly critical by patients (M = 43.0%), but positive/confirming by consulting oncologists (M = 73.5%). Although 22.2% of patients expected a treatment transfer, this topic (3.3% of consultation time) was rarely explicitly discussed. Patients who were referred back were significantly less satisfied (d = 0.85).ConclusionPatient-provider communication in oncological SOs appears insufficiently aligned.Practice ImplicationsPatients and oncologists need support to explicitly and productively communicate about SO-specific topics and to better manage expectations. Recommendations are provided.     

Challenges faced by families of critically ill patients during the first wave of the COVID-19 pandemic

ObjectiveTo understand how surrogates of critically ill patients adjusted to challenges that resulted from the COVID-19 pandemic.MethodsParticipants (N = 62) were surrogates of critically ill adults with COVID-19 in the ICU at an urban, academic medical center from March to June 2020. Participants were recruited using convenience sampling and took part in one-time qualitative individual interviews via telephone. Qualitative data were analyzed using thematic content analysis.ResultsQualitative analyses yielded four types of challenges: Communication with the medical team, communication among family members, understanding and tracking medical information, and distress related to visitor restrictions. To adjust to challenges related to communication, participants developed routines for receiving updates from the medical team and providing updates to other family members. To adjust to the challenge related to comprehension, participants sought information from external sources such as family members in healthcare fields. To adjust to the challenge related to visitation, participants found some comfort in video calls with the patient.ConclusionsSurrogates of critically ill patients with COVID-19 faced multiple types of challenges yet adjusted to those challenges.Practical ImplicationsFuture research should focus on ways to support the wellbeing of surrogates during times of restricted hospital visitation.Clinical trial registered at ClinicalTrials.gov (NCT03969810).     

Patient-centered communication and prognosis discussions with cancer patients

ObjectiveTo examine physician communication associated with prognosis discussion with cancer patients.MethodsWe conducted a study of physician–patient communication using trained actors. Thirty-nine physicians, including 19 oncologists and 20 family physicians participated in the study. Actors carried two hidden digital recorders to unannounced visits. We coded recordings for eliciting and validating patient concerns, attentive voice tone, and prognosis talk.ResultsActor adherence to role averaged 92% and the suspected detection rate was 14%. In a multiple regression, eliciting and validating patient concerns (β = .40, C.I. = 0.11–0.68) attentiveness (β = .32, C.I. = 0.06–0.58) and being an oncologist vs. a family physician (β = .33, C.I. = 0.33–1.36) accounted for 46% of the variance in prognosis communication.ConclusionEliciting and validating patient concerns and attentiveness voice tone is associated with increased discussion of cancer patient prognosis as is physician specialty.Practice implicationsEliciting and validating patient concerns and attentive voice tone may be markers of physician willingness to discuss emotionally difficult topics. Educating physicians about mindful practice may increase their ability to collect important information and to attend to patient concerns.     

Managing uncertainty and responding to difficult emotions: Cancer patients’ perspectives on clinician response during the COVID-19 pandemic

ObjectivePatients undergoing cancer treatment during the COVID-19 pandemic have experienced stress and uncertainty with respect to disruptions in cancer care and COVID-19 related risks. We examined whether clinicians’ responsiveness to patients’ uncertainty and difficult emotions were associated with better health and well-being.MethodsPatients were recruited from cancer support communities and a market research firm. Respondents assessed clinicians communication that addressed uncertainty and difficult emotions. Health status measures included mental and physical health, coping during the pandemic, and psychological distress.Results317 respondents participated in the study. Patients’ perceptions of their clinicians responsiveness to patient uncertainty and negative emotions were associated with better mental health, physical health, coping, and less psychological distress (all p-values <0.001). Respondents with greater self-efficacy and social support also reported better health.ConclusionEven when controlling for patients’ personal and health-related characteristics, clinicians’ communication addressing patients’ uncertainty and difficult emotions predicted better health, better coping, and less psychological distress. Access to social support and self-efficacy also were associated with better health status.Practice implicationsClinicians’ communication focused on helping with uncertainty and difficult emotions is important to cancer patients, especially during the pandemic. Clinicians should also direct patients to resources for social support and patient empowerment.     

Understanding cancer caregiver burden over time: Dyadic assessments of family cohesion,conflict and communication

ObjectivePreviously we identified three distinct cancer communication concordance groups among cancer patient-caregiver dyads. This secondary analysis examined patient and caregiver reports of family functioning (cohesion and conflict) as associated with cancer communication concordance and assessed each as independent predictors of perceived caregiver burden among hematological cancer caregivers.MethodsA case series of hematological cancer patient-caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Using the previously identified communication groups this analysis prospectively examines patient and caregiver perceptions of family cohesion and conflict and the association with burden over time.ResultsCaregiver burden decreased over time. Caregiver, but not patient perceptions of family cohesion decreased over time; decreased cohesion and increased conflict was associated with greater cancer communication discordance.ConclusionsThis work lends further support to the use of cancer communication congruence typologies for identifying potentially vulnerable dyads. Discordant cancer communication and declining caregiver perceptions of family cohesion may represent opportunities to intervene using family focused supportive services.Practice implicationsOnly caregiver perceptions of family functioning were associated with burden therefore identifying and supporting those caregivers with worsening communication and family function is important.     

Engaging patients in population-based chronic disease management: A qualitative study of barriers and intervention opportunities

ObjectiveCardiovascular disease (CVD) continues to be a leading cause of morbidity in the U.S. Managing CVD risk factors, such as diabetes or hypertension, can be challenging for many individuals. We investigated the barriers experienced by patients who persistently struggled to reach their CVD risk factor control goals.MethodsThis qualitative study examined patient, clinician, and researcher observations of individuals’ experiences in a chronic disease management program. All participants (n = 332) were enrolled in a clinical trial testing a skills-based group intervention seeking to improve healthcare engagement. Data were analyzed through a general inductive approach and resulting themes were structured along the Capability-Opportunity-Motivation-Behavior framework.ResultsAnalyses identified care engagement barriers related to participants’ communication skills and activation, care team relationship processes, and emotional factors. Although most participants reported benefitting from skills training, persistent barriers included distrust of their providers, shame about health challenges, and dissatisfaction with care team interactions that were described as impersonal or unresponsive.Conclusions and practice implicationsEfforts to support engagement in CVD risk factor management programs should address whether patients and their care team have the necessary skills, opportunities and confidence to proactively communicate health needs and engage in non-judgmental interactions for goal-setting, rapport-building, and shared decision-making.     

Communication of genetic test results to family and health-care providers following disclosure of research results

PurposeFew studies have examined methods to promote communication following the return of DNA mismatch repair genetic test results obtained during research. The purpose of the present study was to evaluate a telephone protocol for returning research results of DNA mismatch repair gene testing to identify Lynch syndrome.MethodsWe invited individuals with known DNA mismatch repair mutations in their family, who were enrolled in the Colon Cancer Family Registry at the Mayo Clinic, to participate in this study. Participants completed surveys before and 6 months after DNA mismatch repair test result disclosure.ResultsAmong 107 participants, 79% opted to learn their DNA mismatch repair test results; of these, 44 (41%) carried DNA mismatch repair mutations. After disclosure, 54% reported screening for any type of cancer. Among carriers, >74% reported communicating results to family; communication was predicted by baseline confidence in coping with the genetic test result (Z = 1.97; P = 0.04). Result disclosure to a physician was predicted by greater perceived cancer risk (Z = 2.08; P = 0.03) and greater intention to share results with family (Z = 3.07; P = 0.002).ConclusionResearch versus clinically based gene disclosure presents challenges. A telephone disclosure process for the return of research-based results among Lynch syndrome families led to high rates of result uptake and participant communication of results to providers and family members.Genet Med 2014:16(4):294–301.     

Psychometric assessment of the Concerns about Late Effects in Oncology Questionnaire (CLEO) among female breast cancer survivors

ObjectiveThe Concerns about Late Effects in Oncology (CLEO) questionnaire was developed to measure concerns cancer survivors may have about late effects. The current study sought to assess the Concerns about Late Effects in Oncology’s (CLEO) psychometric properties – factor structure, construct validity, discriminatory power, and internal consistency.Methods147 breast cancer survivors completed a survey. Factor structure was determined by exploratory factor analysis (EFA). Construct validity was assessed against fear of cancer recurrence, anxiety, depression, quality of life, and neuroticism. Discriminatory power was assessed against participants’ age and clinical characteristics.ResultsThe EFA confirmed a 4-factor structure; health professionals’ support, psychological impacts, adapting, and daily functional impacts. There was only partial support for construct validity and discriminatory power. The CLEO demonstrated excellent internal consistency, with an overall Cronbach’s α = 0.87 (health professionals’ support: α = 0.89, psychological impacts: α = 0.93, adapting: α = 0.82, and daily functional impacts: α = 0.89).ConclusionThe findings suggest further development of the CLEO should focus on the psychological and functional impacts of late effects.Practice implicationsUse of the CLEO may enhance communication about the impact of late effects, ensuring earlier identification and management of late effects in this population.     

Treatment-related communication experiences and expectations among Indian cancer patients receiving radiation therapy and their family members: A qualitative study

ObjectiveTo explore Indian cancer patients’ and their primary family caregivers’ (PFC) experiences and expectations of treatment-related communication with their physician while undergoing radiation therapy.MethodsParticipants, comprising patient-PFC dyads (n = 32), patients only (n = 33) and PFC only (n = 7), were recruited from one hospital in Mumbai, India. Semi-structured interviews explored participants’ perceived role in cancer-related decision-making, diagnosis and prognosis communication experiences with the physician, communication expectations of their treating physician, and information needs. Interviews were audio-recorded, transcribed verbatim, and analysed using the framework approach.ResultsMain themes included: (i) patients’ passive role in treatment communication, (ii) family as an integral part of the medical consultation, and (iii) dyads’ expectations and beliefs about the role of the physician.ConclusionIndian cancer patients played a passive role in treatment decision-making while physicians were seen as primary medical decision-makers. Further, PFCs provided the final consent for the treatment plan and acted as a mediator/moderator between the patient-physician.Practice implicationsThese findings suggest the need for (i) interventions such as question prompt lists that may improve patient activation and caregiver preparedness, and (ii) triadic communication training interventions for optimal communication between the three stakeholders (i.e., patient, physician and PFC).     

Incidence and predictors of positive and negative effects of BRCA1/2 genetic testing on familial relationships: a 3-year follow-up study

PurposeLittle is known about the long-term impact of BRCA1/2 testing on the relationships between family members. We assessed the incidence of positive and negative family relationship effects of BRCA1/2 testing in the 3 years after result disclosure and identified predictors of these effects.MethodsA total of 485 women and 67 men who had undergone BRCA1/2 testing were asked 3 years later whether having been tested had improved and/or disrupted relationships with their relatives. The associations with sociodemographic, medical, and psychosocial characteristics were assessed.ResultsGlobally, 85.1% did not report any positive or negative effects of genetic testing on family relationships. Positive and negative effects were reported by 13.2% and 3.7% of participants, respectively. Reporting positive relationship effects was associated with older age, intolerance for uncertainty, cancer-specific distress, and more social support. Low education, positive attitude toward prophylactic mastectomy, and low social support increased the likelihood of negative effects.ConclusionOur findings do not support the belief that family relationships are frequently disrupted by BRCA1/2 testing. Understanding that most family relationships are unchanged long term by genetic testing may help genetic service providers encourage those considering testing to overcome hesitancy related to potential difficulties of communicating results to relatives.Genet Med 2012:14(1):60–68.     

Challenges and approaches to involving family caregivers in primary care

ObjectiveOlder adults are commonly accompanied to routine medical visits. This study identifies challenges and explores approaches to managing patient-family interactions in primary care.MethodsSemi-structured interviews were conducted with primary care clinicians and staff (N = 30) as well as older adult patients and family caregivers (N = 40). Interviews were analyzed using content analysis.ResultsThree major challenges to patient-family interactions were identified: navigating patient autonomy and family motivation to participate; adjudicating patient-family disagreements; and minimizing obtrusive behaviors by caregivers. Three approaches to managing patient-family interactions were identified. Collaborating involved non-judgmental listening, consensus-building, and validation of different perspectives. Dividing involved separating the patient and family member to elicit confidential information from one member of the dyad. Focusing involved re-directing the conversation to either the patient or family member while minimizing input from the other. Approaches varied by patients’ cognitive status and overall health condition. In general, patients and caregivers expressed the most positive attitudes toward collaborating and patient-directed focusing approaches.ConclusionPrimary care clinicians use varied approaches to managing their interactions with patient-family dyads. Patients and caregivers generally prefer those approaches that involve collaborative rather than individual discussions.Practice implicationsFindings suggest the potential for the development of communication-focused interventions to promote positive clinician-patient-family interactions.