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Abstract
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INTRODUCTION
Type 1 diabetes mellitus (T1D) is a common chronic condition in the U.S and worldwide. T1D is one of the most prevalent and highest in incidence of all childhood chronic diseases.1 The SEARCH for Diabetes in Youth Study, funded by the CDC and NIH, estimated 15,000 new cases of T1D in youth under age 20 in 2003, which increased to 18,436 new diagnoses in 2009.2,3 Although there are racial and ethnic variations in prevalence, incidence of T1D has been increasing worldwide.4,5 In the U.S, between 1.25 and 3 million children and adults are currently diagnosed with T1D.6,7
Advances in insulin therapy have improved diabetes management. Individuals with T1D do not produce sufficient levels of endogenous insulin to use blood glucose efficiently. The standard of care for T1D is exogenous insulin administration. Advances in intensive insulin therapy over the past decades have improved glycemic control and reduced incidences of long-term complications.8 Continuous subcutaneous insulin infusion, commonly referred to as insulin pump therapy, was introduced in the late 1970s and delivers a continuous dose (basal) and manual dose (bolus) for meals and hyperglycemic events. allows for and continuous glucose monitors were developed in the late 1970s and early 1980s, respectively, to (Pickup 2015). To properly manage glucose levels, people with T1D must maintain awareness of how factors such as food intake and physical exertions will affect their glucose levels.
Despite advances in insulin therapy, lack of transitional support between pediatric and adult diabetes care leads to consequent issues with glycemic control. The need for an efficient transition in care from providers that understand the specific needs of this population has been emphasized.9,10 The abruptness of the transition often leads to delayed initial adult care visits, or losses to follow up altogether.9,11,12 Inconsistent follow-up care in children has been associated with more frequent acute complications (hypoglycemia, hyperglycemia, diabetic ketoacidosis) as well as long-term complications (retinopathy, nephropathy).13
Emerging adults with T1D face challenges with self-management that are specific to their phase of life. Emerging adulthood is the developmental stage after adolescence, which involves new responsibilities, independent decision-making, and advancement towards self-sufficiency.14 Emerging adults wrestle with life decisions about career and financial responsibilities and manage life without established routines or stable living situations, which are complex enough for those without a chronic disease.14 Emerging adults with T1D must balance these developmental challenges with the requirements of diabetes management, including more unfamiliar tasks such as making medical appointments and financing healthcare once they are no longer covered under parental insurance.15
Emerging adults with T1D are generally characterized by poor adherence, sub-optimal glycemic control, and increased risk of complications and death. From childhood to adolescence and early emerging adulthood, there is a trend of declining regimen adherence and poorer glycemic control.16–18 A Virginia study found that 80% of emerging adults do not meet hemoglobin A1c levels recommended by the American Diabetes Association.18 Cardiovascular disease is more prevalent at a younger age in people with T1D compared to the non-diabetic population.19 The risk of mortality is three to six times higher in young adults with T1D compared to their age-matched counterparts.20,21 Death in these patients occurs mostly from acute complications such as hypoglycemia, hyperglycemia, and DKA, as well as from chronic complications such as cardiac, renal, and cerebrovascular disease.21
There are limited studies on emerging adults with T1D.(Hannah et al 2013) Previous research has emphasized the importance of more data on this population regarding their transition in diabetes management. The ADA (standard diabetes care). One study focused on emerging adults
Because diabetes affects every organ system in the body, supporting the whole body through a holistic perspective on health is as important as maintaining proper glycemic control. Glycemic control affects all tissues of the body, because every cell utilizes glucose. Thus, diabetes is a systemic disease that affects all organs. Neuronal, renal, and retinal cells are more sensitive to fluctuations in glucose levels; hence chronic complications such as retinopathy, nephropathy, and neuropathy are common in diabetic patients.22 Prolonged hyperglycemia also contributes to oxidative stress, inflammation, and accumulation of advanced glycated end-products, which can lead to neurodegeneration and microvascular complications.23 Oxidative stress has been associated with cardiovascular disease and peripheral neuropathy in adults with type 2 diabetes.24 Nutritional supplementation with anti-oxidants such as vitamin E and flavonoids may not directly affect blood glucose levels, but Vitamin E has been shown to lower lipid peroxidation (reduced oxidative stress) in children with type 1 diabetes and a flavonoid rich diet has been correlated with lower hsCRP (reduced inflammation) and reduced odds of retinopathy in adults with diabetes.25,26
Glycemic control is affected by multiple factors, and each person may respond differently to each situation. Therefore, individualized care is necessary to allow
Although CIH usage has been evaluated in pediatric and older adults with T1D, it has not been evaluated in emerging adults with T1D. Several studies have assessed the use of CIH modalities and their perceived effect in pediatric patients with T1D.27–32 In surveys and interviews of parents who implement CIH approaches to their child’s diabetes management, 54% were satisfied with CIH use, 30-67% found them to be beneficial, and 52% would recommend its use to others. 27–29,32 However, when children are asked about their own perceptions of CIH use, they may report different results than what their parents report.30 Parental use of CIH therapies is significantly associated with implementing them into their child’s diabetes management.31 Therefore, knowing the perspectives of the T1D patients themselves about their openness towards CIH approaches and beliefs on CIH effectiveness would be beneficial. CIH use is commonly reported in adults with T1D, but patient perceptions of its effectiveness are usually not evaluated.33–35 To our knowledge, there are no studies that report the attitudes toward CIH approaches to diabetes management specifically in emerging adults with T1D. Further, studies have mentioned that while pediatric diabetes care centers around finding holistic management strategies that fit into the family’s lifestyle, adult care is more focused on medical problems, where visits are shorter, and involve less input from the physician to find an individualized treatment plan that fits into the patient’s lifestyle. (peters 2011) Adult patients are thus expected to make their own choices and figure out management methods on their own.
Emerging adulthood is a time for developing lifelong behaviors, and may serve as a critical window of time for implementing CIH approaches that promote overall health in T1D patients. The initial years of emerging adulthood may be filled with anxiety over uncertainties of the future and new challenges of independent living. In light of such demanding changes, expecting emerging adults with T1D to accept new diabetes management strategies may seem unrealistic, as some studies have hypothesized. (Peters 2011, Hanna et al 2013) However, these changes do not necessarily result in worsened diabetes management for the entire emerging adult population. A longitudinal study found that their sample of emerging adults did not exhibit worsened diabetes management post-high school, even if they were living independently of their parents. (hanna et al 2013). Some emerging adults with T1D actually show increased motivation to take control of their diabetes. (Citation) Some become more receptive to changes in behavior to improve glycemic control, and recognize the importance of proper diabetes self-management.36 Many people with chronic diseases do not implement CIH approaches as a rejection of or disappointment with conventional medicine, but rather for the potential of these therapies to promote the highest possible state of overall health despite their chronic illness.37 Emerging adulthood may serve as a critical time period to introduce CIH approaches to diabetes management, where individuals are focused on establishing life habits and improving their overall health.
METHODS
Approach:
The study consisted of questionnaires and a focus group discussion. The questionnaires alone will only provide limited categories of responses, and may be subjective to interpretation of the question or answer scale. A focus group is an interviewing technique that incorporates group interaction to facilitate discussion of topics, which can reveal more in-depth expressions of ideas than those conveyed through individual interviews. The addition of a focus group discussion will provide meaning and context behind attitudes and opinions collected through the questionnaires. The mixed-methods design allows for a thorough exploration of perceived diabetes self-management and attitudes towards complementary and integrative health (CIH) approaches for management.
Sample:
Ethical approval was obtained from the Institutional Review Board of the National College of Natural Medicine (NCNM). Emerging adults with T1D were recruited from the general population in the Portland metropolitan area. Recruitment flyers were posted at universities, pharmacies, diabetes clinics, and wellness centers. The link to the study website was also posted in T1D group sites, such as Facebook. Eligibility was assessed during a telephone screening. The inclusion criteria were: 1)
Between the ages of 18-29, 2) self-reported to have type 1 diabetes mellitus, 3) currently living independently, not residing within the family home (where they grew up) for at least 6 months out of the year, and 4) able to communicate clearly and fluently in English. Exclusion criteria were diagnoses with type 2 diabetes mellitus, and unwillingness or inability to travel to NCNM or foreseeable issues participating in a two-hour focus group visit.
Data was collected without any personally identifiable information. The participants freely chose a study packet that contained the questionnaires labeled with study ID numbers, and thus those numbers were not linked to participant names and no log was kept linking the ID numbers to any identifiers. Therefore, the ethical review board deemed that an information sheet could be used in place of a full informed consent procedure. The information sheet contained full details about the study including possible risks, benefits, and confidentiality. This information was read to interested participants during the phone screening, where they could ask any questions privately. The information sheet was reviewed at the beginning of the focus group visit.
Focus Group:
The focus groups were held at the Helfgott Research Institute at NCNM, and lasted about 90 minutes. HI facilitated the discussion using a preset discussion guide, and KT took notes during the discussion. The focus groups were audio-recorded, so that the discussion could later be transcribed verbatim. All documents and data were secured behind locked doors or an encrypted file location, where only study investigators had access.
Measures:
Scale (PDSMS)
This validated 8-item scale is based on the Perceived Medical Condition Self-Management Scale (PMCSMS), which is a template designed to be applied to specific chronic diseases such as diabetes.38 Other studies have applied the PMCSMS to HIV patients (PHIVSMS) and patients with acne.39,40 The PDSMS measures the self-efficacy of patients’ diabetes management. Total score can range from 8 to 40, with higher scores indicating a higher confidence in diabetes self-management. The PDSMS specifically has been validated for internal consistency, with a Cronbach’s alpha of 0.83. Other psychometric properties include a negative correlation with hemoglobin A1c (r= -.30) and average blood glucose (r= -.32), which means that better perception of self-management was associated with better glycemic control.
Medicine Questionnaire (HCAMQ)
The HCAMQ has two distinct subscales: one measures the attitudes toward holistic health (HH), including the belief that the body is capable of healing itself, and the other measures the attitudes towards complementary medicine (CAM). The participants were not told what either of these terms mean before they complete the survey, and their responses will be based on their perspectives prior to the focus group. The HCAMQ was originally developed by Hyland et al in 2003, and construct validity for each subscale was determined separately by Kersten et al.41,42. They reported a Cronbach’s alpha of 0.83 for the CAM subscale, and 0.75 for the HH subscale.42 Subsequent studies that have used this scale have tended to confirm the internal validity; Ganasegeran et al., for example, demonstrated Cronbach’s alpha statistics of 0.74 for the complementary medicine scale, and 0.83 for the holistic medicine scale.43
The basic demographics questions include gender, age, race, and ethnicity (#1-4). Relevant socioeconomic status demographics include employment and education status, and health care coverage (#5-9). The insurance categories were taken from the American Community Survey. Emerging adulthood demographics include duration of independent living (#12), and directly asking if the participant feels that he/she has reached adulthood, with an open ended question to explain why (#10-11), which were taken from emerging adult studies by Arnett.14,44 Diabetes related demographics include age since diagnoses, most recent hemoglobin A1c, method of insulin administration, and continuous glucose monitor use (#13-17).
Analysis:
After HI transcribed the discussions, the transcripts were uploaded onto a web-based, qualitative analysis software called Dedoose. The data will be analyzed through a phenomenological approach, which involves the interpretation of participant experiences to describe a phenomenon.45,46 The method of interpretation involves thematic analysis of the focus group transcripts, where coders will identify patterns (themes) in the transcript. Each transcript was individually coded by three investigators (HI, KT, and DN) using an inductive coding process. After an initial round of open coding, analytic categories were identified, and the coders met together to develop an initial coding structure. Each transcript was individually coded with the coding structure. Then the coders met again to further refine the codes, adding new codes and combining repetitive ones in order to create a final agreed-upon codebook that reflected an accurate characterization of the data set. Using the formal codebook, the transcript will be coded for the final time. Inter-rater reliability was determined by a pooled kappa statistic, using Dedoose. Finally, the salient themes were identified and extracted from the data set.
For quantitative analysis of the PDSMS and HCAMQ, summary scores were calculated from individual item responses, using the scoring guide specific to the instrument. A total score was calculated for the PDSMS, and two subscale scores were calculated for the HCAMQ. A Cronbach’s alpha was calculated for each scale to contribute to the existing literature on the internal validity of the scales. For the scale item scores, any missing values were left out, so that averages were taken from the number of responses, not number of participants. The missing values were also left out in the Cronbach’s alpha analysis. For the PDSMS, the individual total scores were calculated, and these scores were ranked according to a grading scale. The grading scale was in increments of 20%, as follows: F (20% and below), D (21 – 40%), C (41 – 60%), B (61 – 80%), and A (81 – 100%).
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Exploratory aims will assess associations between demographics and interest in CIH approach for management, and associations between demographics and diabetes self-management. Associations between continuous (scale gradient) variables will be assessed using Pearson’s correlation coefficient or Spearman’s non-parametric correlation, as appropriate. Differences in scale outcomes between factor groups will be assessed using independent-samples t-test or one-way ANOVA. Associations between categorical variables will be assessed with chi-squared analysis or Fisher’s exact test (if some categories have very few members). All tests will be judged using alpha value of 0.05, where p<0.05 will be deemed significant.
RESULTS
Sixteen participants expressed interest in the study. One did not meet the age requirements. Another withdrew interest because of work schedule. One participant was enrolled, but did not show up to the focus group due to a family emergency, and did not respond to emails regarding a second focus group opportunity.
The dataset includes responses from 13 participants (18-28 years; 69% female) from three focus groups (Table 1). The first focus group consisted of six women, the second had two participants (1 female), and the third had five participants (3 female). On average, they had been diagnosed with T1D for 13.4 years and had been living independently for 4.7 years (Table 1). Ten out of 13 participants were currently on CSII (Table 1).
About half of the participants (n=6) considered themselves as adults, while the other half (n=7) said that while they feel that they are adults in some ways, they have not fully reached adulthood in other ways (Table 1). Some of the reasons why participants felt they haven’t completely reached adulthood include not having yet learned or mastered the responsibilities of being an adult, and having parents still take care of a few things such as finances and insurance. Being married or having a stable partner and full financial independence were cited as reasons why participants felt like they had completely reached adulthood. Independent living was cited as a characteristic of both groups.
The initial coding structure resulted in 14 parent codes with 82 child codes. After the collaborative process of refining and combining codes, the final coding structure contained 8 parent codes with 46 child codes. There was an average of 93 excerpts per transcript by a single coder (range 76 – 121 excerpts). The codes were not meant to be exclusive, meaning that an excerpt could be labeled with more than one code. The salient themes and subthemes are given in Table 2, and are subsequently discussed.
HCAMQ:
For our sample, the average HH subscale score was 24.5 (82% of maximum possible) and the average CAM subscale score was 23.2 (64% of maximum possible) (Table 3). The CAM subscale had a Cronbach’s alpha of .87, which indicates good internal consistency. The HH subscale had very poor internal consistency, with a Cronbach alpha of -.35. Omitting question Cronbach’s alpha to .04, which is still very poor.
Familiarity with CIH:
When participants were first asked what the terms “complementary” and “integrative” health meant to them, four individuals responded that they did not know or were not sure. Four others stated that CIH meant non-traditional, non-mainstream types of medicines. Three mentioned “natural” or “home-remedy.” Many of them specified various modalities they believed were included in the CIH category (Table 5).
Personal CIH experiences:
Modalities Utilized:
Some participants had tried various CIH therapies for diabetes management in the past. Herbs and supplement use was the most commonly mentioned therapy mentioned (Table 6). Herbs were not solely used for blood sugar control, but also for other aspects of diabetes management, including dealing with diabetes in social settings, healing scar tissue from infusion sites, and stress management.
“One of the herbs I’ve used before, is called gymnema. There’s a lot of stuff that says it’s good for diabetes, but the main effect you notice instantly if you either do a tea or tincture of it, if it touches your mouth, it’ll block the receptors for sugar, so you can’t taste sweet. So that’s good like if you’re going to a social event, and you’re too high to have anything, it won’t taste sweet so it’s not worth putting in your mouth.” (123)
“Diabetic formulas from different companies [have] worked, but I’m always obsessed with finding something better.”(120)
“I haven’t found cinnamon particularly effective.” ()
“I feel like the most consistent one that’s helped me is cannabis…. I took a break for a while to pass a drug test, and for the first four days my blood sugars wouldn’t drop below 200…I think it definitely has a significant effect and benefit.” (123)
“You know when you get scar tissue build-up, tried frankincense on that, and that went away in two days. Scars from the sites on my stomach.” (120)
“Nowhere as successful [as the frankincense mentioned] but I’ve tried vitamin E oil. But I’m not good at being consistent with it.” (124)
Mind body therapies for relaxation and stress management were also commonly mentioned. As mentioned previously, participants found stress management is essential to diabetes management. They mentioned modalities such as massage, aromatherapy, acupuncture, qi gong, and belly breathing.
“Qi gong, I’ve done that. And that mellows me out pretty well. And belly breathing. They put like a bean bag on your stomach, and they’re just like ‘breathe. Move the bean bag.” And then it actually helps a lot. Then my blood sugar’s better for the rest of the day at least.” (114)
“Almost every time I feel relaxed, my blood sugar’s better, or I need less units when I correct something or to cover a meal.” (120)
“I have to be really mindful and on top of how I’m feeling [for diabetes management].” (115)
There were mentions of seeking additional support from non-conventional practitioners, namely naturopathic physicians and Chinese medicine practitioners. Participants found that the services offered by these practitioners were helpful in achieving better diabetes management.
“[The effects of] acupuncture, that lasted. That was three days ago, so for three days it’s [blood sugar levels] [have] been good, so I think it works pretty well.” (120)
“My problem’s when I get stressed out, my blood sugar spikes, so it [acupuncture] helped in that way… It definitely helps, because it’s a way to relieve stress.” (114)
“I have gone to a naturopath to address my diabetes. He didn’t really do anything that was not conventional, as far as diabetes goes, but the thing I really did like was he had a lot of empathy, and it was nice to sit and talk with somebody who I didn’t feel like I was being judged by. And my A1c wasn’t bad, but it wasn’t great. And he was like ‘it’s okay, you’re doing good.’ And just hearing that did a lot for me. And actually got a lot better after that for some reason.” (111)
“Seeing a naturopath now definitely helps because of the fact [of] having so many different treatment options, and just understanding how [I can] become healthier in so many different ways, [and] there’s not a point in which they can say, ‘there’s nothing else I can do for you.’ There’s always something that can be done… There’s always improvements that can be made. ”(123)
Participants were generally receptive to trying complementary techniques to their diabetes management. They felt that successfully living with diabetes meant more than blood sugar control, but also caring for their overall wellbeing. They also mentioned that since diabetes was affected by so many factors, additional therapies to address the aspects that influence blood sugar was important. Participants noted that collaborating and integrating care would be beneficial, since they felt that successfully living with diabetes involved more than just blood sugar control, but also caring for overall wellbeing as well.
“I think [a] benefit[] of complementary health care is like what can you do to reduce the stress in your life, which leads to inflammation… and way[s] to make sure [you] keep yourself healthy so that when illnesses do arise, your body is better able to fight them off. ” (124)
“We need to take extra steps [in stress management] and I could see complementary therapies being really good for that aspect of overall health, since it is so much harder when you have diabetes to stay chill.” (#126)
“I think it’s important to be consistent with your conventional medication… but then… what other health practices are gonna support your diabetes management, and make it so that if you have to take insulin, you don’t have to take as much.” (113)
“I feel like the complementary aspect is that using both [conventional and complementary] together gets the best outcome. You know, why not explore all the options, rather than like stick to one side?” (114)
This phase of life also seemed to be a good time for people with T1D to explore additional therapies that may contribute to diabetes management, since this is when they actually start to think about what they could do for their own management, rather than being told what to do. They also mentioned wanting more research in CIH therapies for diabetes, and find reliable resources to obtain that information.
“When I’m controlling my management myself, I’m more willing to improve the management, more than like ‘okay this is what my mom is saying, or what a doctor is saying’… I think that’s where the questioning comes, right? Like why am I doing what I’m doing to manage my diabetes? What else can be done? Whereas when I was younger, it was like ‘this is how you treat this’ and while I wasn’t absent from those discussions, I certainly had less influence.” (#117)
“I think we should have more studies on unconventional things” (113)
“I’ve just never ever ever in my whole entire life, had a doctor even bring up [CIH therapies] for anything… I’m really curious.” ()
“I’m definitely open to whatever to help with stress, but I’m not sure how exactly, [or] what I’m looking for.”
“I think that for integrative medicine and stuff for diabetics, it would be good to put out information of how it can help…it’s a matter of educating society”
“I don’t really have any venues or access or knowledge about complementary medicine… I don’t feel like I’m educated enough and I also don’t… know where you [would] even begin with that.”
PDSMS:
The average PDSMS score (possible range 8-40) was 28.09 (70% of maximum). For the individual scores, most respondents (n=8) scored in the B grade range. Only one person rated themselves in a way to score in the A range. No respondents scored in the F range. The Cronbach’s alpha
The Effectiveness and Challenges of Management Strategies
Diet and Meal Planning:
While discussing diabetes management methods, the top contributors that participants mentioned were keeping a consistent meal plan and finding specific diets that worked for each individual. In particular, participants mentioned that successfully planning ahead for meals was helpful in making sure they would not find themselves hungry with only high-carb food choices available. Striving for a routine and consistent meal planning was important in maintaining control.
“It’s all about routine, all about consistency. In the morning I have my tea, Greek yogurt, and I just don’t touch anything else until lunchtime. And if I do, I’m ruined for the rest of the day.”
“Whenever I don’t totally plan for meals, like if I’m out and about, and the only option is to buy something, usually it’s something terrible and then my blood sugar is wrecked”
Participants seemed to find individualized diets that worked specifically for them. All participants who mentioned having at least tried a vegetarian or vegan diet (n=5) noted that the dietary change helped improve blood sugar management. For some, a high protein, low carb diet worked, and others’ diets were somewhere in between.
“Six or seven years ago, I went on a really strict vegan diet, and that reduced the amount of insulin I needed daily, I want to say like a 40% drop.”
“In exchange for eliminating carbohydrates, I end up eating a lot of protein. I think that’s done a lot to improve my blood sugar.”